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1 Declaration
THE INTERACTIONAL DYNAMICS OF
THE GENETIC COUNSELLING SESSION
IN A MULTICULTURAL, ANTENATAL
SETTING
Tina-Marié Wessels
A thesis submitted to the Faculty of Health Sciences, University of the Witwatersrand, in
fulfilment of the requirements for the degree
Of
Doctor of Philosophy
i Declaration
Declaration
I, Tina-Marié Wessels, declare that this thesis is my own work. It is being submitted for the
degree of Doctor of Philosophy in Medicine in the branch of Human Genetics, in the
University of the Witwatersrand, Johannesburg. It has not been submitted before for any
degree or examination at this or any other university.
_____________________________
Date
ii Dedication
Dedication
For Esmari and Tanya
iii Abstract
Abstract
The present study explored the interactional dynamics of genetic counselling sessions in
intercultural clinics in Johannesburg. Genetic counselling is a relatively young profession
and although research is available on its outcomes there is a paucity of literature on what
actually occurs in the interactions between genetic counsellors and their patients and even
less is available on intercultural encounters.
This study‘s focus was on examining the genetic counselling interactions in a multicultural
antenatal setting. The research was concerned with how communication occurred and the
methodology selected for the study was based on discourse analysis. The analysis drew on
the principles of conversation analysis, theme orientated discourse analysis, and
considerations from intercultural communication studies. The data comprised of 17 video-
recorded prenatal genetic counselling sessions conducted by six genetic counsellors. The
sessions were in English. All the counsellors‘ first language was English while the
women‘s first language were one of the 11 official languages (with one exception) spoken
in South Africa. The women were referred to discuss their increased risk of having a baby
with a chromosome abnormality due to advanced maternal age. The sessions were video
recorded, transcribed and analysed.
It was apparent during the initial phases of the analysis that there was an order to the
interactions and six distinct phases could be identified. These were the opening,
information-giving, information-gathering, closing, decision-making and counselling
phases. The main components that appeared significant included the opening, decision-
making and counselling phases and these were analysed further. Counsellor dominance in
iv Abstract
the interactions manifested in the number of strategies used to guide the women through
the counselling session. Through their active participation, the counsellors identified the
agenda and controlled it throughout the interaction. During the decision-making sequences,
the counsellors made an effort to adhere to the ethos of non-directiveness however they
used directive strategies to assist the women to make a decision regarding having an
amniocentesis performed. Even during the counselling segments where the counsellors
and the women discussed issues related to the women‘s life, the counsellors controlled the
development of these segments.
In contrast to the counsellors‘ dominance of interactional space, the women shared issues
relating to their life world during the counselling segments. This apparent contrast seemed
to create tension in the counsellors‘ role as they had to either ‗educate‘ or ‗counsel‘.
Tension was further created by the counsellors‘ perceived obligations to practice in a
particular way. Adhering to the principles of the profession thought to increase autonomy
and empower patients seemed to have achieved the opposite in the interactions in this
setting.
It is suggested that the emerging tensions in these sessions are linked to the health care
setting in which patients, because of social and political reasons, have not been active
participants in their healthcare decisions. The interactions were shaped by the health care
system of which influences could be seen during the setting of the agenda, the order in the
interactions and the counselling techniques used. As a result, context played a critical role
in explaining the phenomena described. The interactions were found to be complex.
Success could not be ascribed to a single construct and it was rather found that the setting,
the genetic counselling agenda and the individuals in the interactions influenced each
v Abstract
other. Unlike what was expected upon starting the research, the emerging phenomena
could not be attributed to culture.
The findings mainly have implications for genetic counselling practice in South Africa as
existing models of training and practice require adaptation to incorporate the insights
gained. A contextual model of genetic counselling was proposed which takes the
contextual influences and engagement with the patients‘ life world into consideration.
This model is thought to have benefits and is hoped to advance the profession towards
patient-centered genetic counselling practices in South Africa. It is anticipated that the
insights gained here will contribute to international literature and that the lessons learnt
may be beneficial to practitioners in other settings.
vi Acknowledgements
Acknowledgements
I acknowledge the following people who supported my study in many different ways:
My supervisor, Prof Claire Penn for all her patience, encouragement and continued
support
Prof Jenny Kromberg for her support, comments and assistance with editing
Sr Merlyn Glass for just always being there
Dr Jenny Watermeyer and the rest of the Health Communications Project for
encouragement and a sense of community
Ms P Craig and the research assistants for helpful comments, interviewing and
transcriptions
Dr Tom Koole, University of Groningen, for introducing me to conversation analysis
The counsellors of the Division Human Genetics, University of the Witwatersrand
The women who participated in the research
The National Research Foundation of South Africa (NRF) Thuthuka funding, The
South African/Nederland‘s Research Programme on Alternatives in Development
(SANPAD), The University of the Witwatersrand Strategic Planning and Resource
Allocation Committee (SPARC) funds and the National Health Laboratory Service
(NHLS) for providing financial assistance which allowed amazing opportunities
My family for their patience and tolerance with me while I was working on this
project
vii Table of Contents
Table of Contents
Declaration i Dedication ii
Abstract iii Acknowledgements vi Table of Contents vii List of Figures x List of tables xi
Abbreviations xii Glossary xiii 1 Chapter 1 Introduction 1
2 Chapter 2 The Practice of Genetic Counselling 7
2.1 Defining genetic counselling 7
2.2 Goals and models of practice 10 2.2.1 Genetic counselling sub-specialties 13 2.2.2 Psychological theories 15
2.3 Main elements as a basis for practice 17 2.3.1 Non-directiveness 17 2.3.2 Risk communication 21 2.3.3 Decision-making 25
2.4 The success of genetic counselling 29
2.5 Genetic counselling in South Africa 33 2.5.1 Health in South Africa 33 2.5.2 The development of Medical Genetics 37 2.5.3 Development of a Master‘s degree in genetic counselling training course 40 2.5.4 Genetic counselling in the Division of Human Genetics, Johannesburg 41
2.5.4.1 Advanced maternal age counselling 42
2.6 Summary 46 3 Chapter 3 Interactional Research 47
3.1 Overview of interactional research on genetic counselling encounters 47
3.2 Structure in interactions 51 3.2.1 Overall structure 51 3.2.2 Interactional structure 54
3.3 Analyses based on components identified from the overall structure 56
3.4 Analyses based on specific phenomena in genetic counselling interactions 58 3.4.1 Establishing the agenda 58 3.4.2 Information giving 62 3.4.3 Risk discussion, decision-making and non-directiveness 64 3.4.4 Counselling 66
3.5 Asymmetry 69
3.6 Nonverbal communication 71
3.7 Multicultural genetic counselling interactions 74
3.8 Summary 74 4 Chapter 4 Intercultural Communication 76
4.1 Defining culture 76
4.2 Culture in genetic counselling 78
viii Table of Contents
4.3 Research regarding culture in genetic counselling 81
4.4 Culture and South Africa 84
4.5 Culturally appropriate genetic counselling 88
4.6 Research examining interactions 91
4.7 Summary 93 5 Chapter 5 Methodology 94
5.1 Study aims and objectives 94
5.2 Research design 95 5.2.1 Qualitative approach 95 5.2.2 The design 97
5.3 The setting 99 5.3.1 Rahima Moosa Mother and Child Hospital (RMMCH) 100 5.3.2 Charlotte Maxeke Johannesburg Academic Hospital (CMJAH) 102 5.3.3 Patient referral procedure 103
5.4 The participants 104 5.4.1 Patient participants 104 5.4.2 Genetic counsellor participants 106 5.4.3 Genetic counselling sessions 107
5.5 Data collection procedure 107 5.5.1 Research assistants 108 5.5.2 Procedure 109 5.5.3 Recordings (Sessions) 111 5.5.4 Interviews (post-session) 111 5.5.5 Ethnographic observations 112 5.5.6 Self-reflection 113
5.6 Pilot study 113
5.7 Analysis framework 115 5.7.1 Approach 115 5.7.2 Transcription 116 5.7.3 Data analysis 119
5.7.3.1 Conversation Analysis (CA) 122 5.7.3.2 Theme-orientated discourse analysis (TODA) 123 5.7.3.3 Methodological considerations in intercultural communication studies (ICC) 125
5.8 Rigour 128
5.9 Ethical considerations 130 5.9.1 Obtaining consent 130 5.9.2 Confidentiality 131
5.10 Summary 132 6 Chapter 6 Results I - Overall Description of the Sessions 134
6.1 The overall structure 135
6.2 Arrangement of the counselling rooms 138
6.3 The components of the genetic counselling sessions 140 6.3.1 The opening phase 140 6.3.2 Information gathering sequence 144 6.3.3 Information giving sequence 149 6.3.4 Closing sequence 155 6.3.5 Decision-making sequence 159 6.3.6 Counselling segments 163
6.4 Discussion 166 6.4.1 Thematic mapping 166 6.4.2 Ordered structure 168
ix Table of Contents
6.4.3 Agency 169 6.4.4 Phases for further analysis 170
6.5 Summary 171 7 Chapter 7 Results II - Analysis of the Opening Phase 173
7.1 The overall structure of the opening phase 173
7.2 Setting an agenda 177
7.3 Agency 190
7.4 Counselling versus teaching 194
7.5 Discussion 199
7.6 Summary 203 8 Chapter 8 Results III – Analysis of the Decision-Making Sequences 205
8.1 Introduction 205
8.2 A description of the process 205
8.3 Different strategies 207
8.4 Orientation to decision-making 217
8.5 Directiveness and non-directiveness 220
8.6 Discussion 226
8.7 Summary 230 9 Chapter 9 Results IV – Analysis of the Counselling Segments 231
9.1 Introduction 231
9.2 Characteristics of the counselling segments 232
9.3 Functions of the counselling segments 234 9.3.1 More information 235 9.3.2 Discussing a concern 236 9.3.3 Connecting 238 9.3.4 Empathy 239
9.4 Development of the counselling segments 241
9.5 Discussion 250
9.6 Summary 254 10 Chapter 10 General Discussion and Conclusion 256
10.1 General discussion 256
10.2 Implications and Recommendations 262
10.3 Methodological considerations 268
10.4 Conclusion and final reflection 272 11 Appendices 276 12 References 314
x List of Figures
List of Figures
Figure 2.1. Reciprocal-Engagement Model of Genetic Counseling (Veach et al., 2007, p.
724) ...................................................................................................................................... 12
Figure 5.1. Visual representation of the data analysis process. ....................................... 127 Figure 6.1. Sequence map of the 17 genetic counselling sessions. ................................... 137 Figure 6.2. Visual representation of the phases of the genetic counselling sessions ....... 138 Figure 6.3. Set up in the counselling rooms ..................................................................... 139 Figure 7.1. Diagram of the structure of the opening phase. ............................................. 176
Figure 8.1. A continuum distinguishing non-directiveness in terms of genetic counsellor
strategies and genetic counsellor interactions .................................................................. 228 Figure 10.1. A proposed contextual model of genetic counselling ................................... 266
xi List of tables
List of tables
Table 5.1. Summary of the characteristics of the 17 patient participants 105
Table 7.1. Summary of the sequences in the opening phase 174 Table 9.1. Summary of the number of counselling segment (No) in each session 234
xii Abbreviations
Abbreviations
AMA Advanced maternal age
ARV Antiretroviral treatment
CA Conversation analysis
DNA Deoxyribonucleic acid
DNHPD Department of National Health and Population Development
Exp Experienced
FPP First pair part
HCP Health communication project
HIV Human Immunodeficiency virus
HPCSA Health Professions Council of South Africa
ICC Intercultural communication
Inexp Inexperienced
MCWH Maternal, Child and Women‘s Health
MRC Medical Research Council
MTCT Maternal to child transmission
NDEPT Nonverbal communication in doctor–elderly patient transactions
NHLS National Health Laboratory Service
NRF National Research Foundation of South Africa
NT Nuchal translucency
PDS Perspective display series
RCS-O Relational communication scales for observational measurement
RIAS Roter interactional score
SAIMR South African Institute for Medical Research
SANPAD South African/Nederland‘s Research Programme on Alternatives in
Development
SPARC University of the Witwatersrand Strategic Planning and Resource
Allocation Committee
SPP Second pair part
TODA Theme-orientated discourse analysis
Wits University of the Witwatersrand
RMMCH Rahima Moosa Mother and Child Hospital
CMJAH Charlotte Maxeke Johannesburg Academic Hospital
xiii Glossary
Glossary
Acknowledgment token : An acceptance of the previous speaker remark, it includes
responses such as ‗yes‘ ‗uhm‘ as well as non-verbal responses
such as head nods.
Activity types : Refers to a setting, its participants and the goals of an
interaction for example, a medical consultation.
Adjacency pair : Is a minimum of two turns (a pair) for example a question (first
turn - FPP) is followed by an answer (second turn SPP).
Advanced maternal age
(AMA)
: Refers to a woman who is over 35 years of age and who is at an
increased risk of having a child with a chromosome
abnormality.
Amniocentesis : A procedure that is performed between 16 and 20 weeks
gestation in which a sample of amniotic fluid is obtained.
Bales Scoring system : A quantitative scoring system of small group interactions in
which the number of turns, different categories of discussions
and who initiated the discussions are counted.
B-event statement : These are declarative statements made by one of the
participants of which the other participant has knowledge.
Candidate understanding : A response from the listener that is more than an
acknowledgment that s/he has heard. It involves a statement
such as ‗in other words you mean….‘
Chromosome : Compact form of DNA (deoxyribonucleic acid) visualized
under a light microscope. Humans have 46 chromosomes.
Client centered therapy : Client-centered therapy (also referred to as person-centered
therapy and Rogerian therapy) is an approach to counselling
and psychotherapy in which the relationship between the
therapist and client plays a key role in allowing the client to
understand his/her problems and find his/her own solutions.
Conversation analysis
(CA)
: A specific analysis method in which an interaction is analysed
with regard to turn-taking, turn-design, sequence organization
and repair organisation.
Counselling model : Kessler‘s‘ model of genetic counselling which is based on
taking the emotional aspects of the patients into consideration.
xiv Glossary
Discourse analysis (DA) : A qualitative methodological approach in social sciences that
involves different sociolinguistic approaches to study language
at the level of a sentence, behaviours linked to social practices
and language as a system of thought.
Discourse types : Refers to style of the interaction for example interview style,
which consists of questions and answers.
First pair part (FPP) : This is the initiation section of an adjacency pair i.e. a question.
Formulation : Producing an utterance referring to the most salient aspects of
another speaker‘s talk. It resembles paraphrasing as used in
counselling skills terminology.
Frame : A frame refers to setting up the context within which messages
or discussions are to be understood.
Information delivery
format
: Terminology used in HIV counselling in which the counsellor
is the speaker/information giver and the patient is the recipient
of the information.
Institutional talk : Interactions that take place in institutions such as medical
consultations and classroom interactions.
Interactional hybridity : A term that refers to the fact that activity types and discourse
types overlap in interactions.
Interview format : In HIV counselling sessions, this refers to discussions in which
the one person asks questions and the other answers.
Life-history narrative
model
: A model proposed for genetic counselling which recognizes
that patients are part of families. In the model the patient is
both narrator and respondent and the counsellor is both
interviewer and listener.
Nuchal translucency
screen (NT screen)
: Ultrasound examination performed between 11 and 13 weeks
gestation. It measures the thickness of a fluid filled space
behind the neck of the fetus.
Perspective display series
(PDS)
: A specific type of questioning in which the patient is invited to
share information and emotions. Also referred to as a
‗reflective frame’.
Polarized questions : Questions which provides options such ‗is this your married or
maiden surname‘.
Reflective frames : See PDS.
Roter interactional score
(RIAS)
: RIAS involves scoring sessions according to the information
given and the amount of talk time by the counsellor and patient.
xv Glossary
Second pair part (SPP) : The response part of an adjacency pair such as an answer.
Sequence map : A ‗map‘ visualized by using different colours to distinguish
patterns or tasks in conversations.
Talk : Sociolinguistic term referring to a conversation.
Teaching model : Kessler‘s‘ model of genetic counselling in which the aim is to
educate patients.
Tellings : Conversation analysis terminology referring to discussions
where patients produce a narrative.
Transcription : The process of producing written documents from voice and/or
video recording.
Transition marker : Signals a shift from one topic or phase to another during an
interaction.
Translation : Translation into another language.
Trisomy 13 : A chromosome abnormality in which a fetus has three number
13 chromosomes. Also referred to as Patau syndrome.
Trisomy 18 : A chromosome abnormality in which a fetus has three number
18 chromosomes. Also referred to as Edwards syndrome.
Trisomy 21 : A chromosome abnormality in which a fetus has three number
21 chromosomes. Also referred to as Down syndrome.
Troubles talk : In HIV counselling sessions, troubles talk refers to discussions
regarding difficult issues.
Turn : Refers to a speaking turn a person takes during an interaction.
Utterance : Spoken words by a person during an interaction.
Voice of medicine : Terminology used by Mishler that refers to medical matters
such as diagnosis, treatment, management.
Voice of the life world : Terminology used by Mishler, which refers to issues regarding
the everyday life of the patient/client.
Wh-type question : Questions that begin with what, where, when, why and allows
open answers.
Yes/no questions : Questions which ―project‖ only a confirmation (yes) or
refutation (no).
1 Chapter 1 Introduction
1 Chapter 1 Introduction
This study is an examination of the genetic counselling interactions in a multicultural
prenatal clinic in Johannesburg. Genetic counselling services have been established in the
United States and the United Kingdom in the 1940‘s but it is a relatively young profession
in South Africa and many other countries. It is still not clear exactly what the goals of
genetic counselling are and what sessions are attempting to achieve (Biesecker, 2001).
This lack of clarity is partly due to the complexity of the interactions and the vast array of
reasons why patients attend clinics, as well as the fact that a complete model of practice
has not yet been developed (Veach, Bartels, & LeRoy, 2007). As a result, the profession
has had to borrow theories and philosophies from other disciplines.
The practice of genetic counselling has been evaluated from an outcomes perspective:
examining what patients wanted from the sessions; whether patients were satisfied with the
service; and whether patients and counsellors have the same agendas. These insights have
been very helpful in learning about the profession but have not provided information with
regard to what happens during the genetic counselling discussions or whether patients and
practitioners actually practise what they say they do in their sessions (Biesecker & Peters,
2001).
Studies examining the genetic counselling process from an interactional perspective
provide an opportunity to understand how genetic counselling occurs in practice. Early
attempts were made by Kessler and others in the USA, using informal methodologies and a
modified Bales scoring system to examine transcripts of antenatal sessions (Kessler &
Jacopini, 1982; Kessler, 1981; Rapp, 1988). This work shed some light on moments in a
2 Chapter 1 Introduction
session where the counsellor has a choice as to whether to engage either with the emotional
or with the scientific aspects and different styles of counselling. More formal
methodologies were later used to score genetic counselling sessions. Studies using the
Roter interactional scoring system (RIAS) (Ellington et al., 2005; Roter, Ellington, Erby,
Larson, & Dudley, 2006a) revealed different forms of communication. Psychosocial talk
could be distinguished from biomedical talk and history-taking questions. These studies
also showed that first and follow-up sessions differed regarding types of communication,
with follow-up sessions containing more psychosocial talk. This was a notably significant
finding and added to the knowledge gained by the work of Kessler and others, but
‗counting and identifying‘ different aspects had limitations. Simply identifying features
could not reveal the nuances of the interactions. Applying qualitative methods from a
sociolinguistic perspective provided an opportunity to examine such detail. Research
utilising such methodology was able to show both how counsellors maintained non-
directiveness in their sessions (Benkendorf, Prince, Rose, DeFina, & Hamilton, 2001;
Sarangi et al., 2004) and the strategies that professionals used to achieve this. It showed
how antenatal screening was discussed (Pilnick, 2004; Pilnick, 2008), how risks (Sarangi
et al., 2003) and information were communicated and how the counsellors discussed and
managed discrepant information (Lehtinen & Kääriäinen, 2005; Lehtinen, 2005).
The majority of these interactional studies however, were performed in Western ―first
world‖ settings. The biomedical model of disease is not the only view patients hold and it
was found that that there were some difficulties in multicultural sessions (Greb, 1998).
The discipline called for this problem to be addressed and a number of theories and
teaching strategies were developed and advocated to assist counsellors to become
multiculturally competent (Weil & Mittman, 1993). Despite these efforts, many questions
3 Chapter 1 Introduction
remain as to the effectiveness of the services provided to patients in multicultural settings,
since what was learned in practice was not always reflected during sessions (Wang, 1998).
Studies were focussed on examining how patients from different settings viewed the
principles essential in genetic counselling, emphasising the disparity between the
biomedical approach of genetic counselling and the patient who values other principles.
Despite the emphasis on the need for counsellors to become multiculturally competent,
very limited research was done on multicultural interactions. Those that were performed,
focussed on miscommunication (Ellington et al., 2007) or provided general descriptions
(Ellington et al., 2005), but the understanding of the process in multicultural settings was
not clarified. More recent work in Hong Kong revealed that the context in which the
sessions took place had an effect on the counselling, specifically on how the
socioeconomic circumstances affected the decision-making process (Pilnick & Zayts,
2011) and how providers‘ adapted to these (Zayts & Schnurr, 2011). This work showed
how context could affect sessions, but that the effects are very subtle and may only be
revealed by examining sessions from a sociolinguistic perspective.
In South Africa, genetic counselling is generally provided in an intercultural setting
(Greenberg, Kromberg, Loggenberg, & Wessels, 2012; Penn & Watermeyer, 2012).
Often, providers of the service and patients are from diverse backgrounds with differences
in beliefs and languages. Disparity in services provided by the state and private sector
exists and the majority of the country‘s patients who are from lower socio-economic
groups and only have access to underfunded and overburdened state health services. Due to
the country‘s socio-political history and the fact that South Africa is a developing country,
patients attending state services are historically passive participants and somewhat
sceptical of the service they receive (Harris et al., 2011).
4 Chapter 1 Introduction
As a practicing genetic counsellor and coordinator of the MSc (Med) in genetic
counselling post-graduate course, I questioned the effectiveness of the genetic counselling
service offered to patients in our intercultural sessions where some of the patients are
unable to, or have limited communication skills in English and hold diverse beliefs. As the
following case illustrates, there are many complex issues that are not yet fully understood.
A young couple was seen for genetic counselling after abnormalities in their fetus were
detected on ultrasound examination. The abnormalities were severe and the prognosis for
the fetus was poor. Termination of pregnancy was offered. The couple was clear that they
wanted to continue with the pregnancy. Further investigations on the fetus were required
in order to make a genetic diagnosis. The couple wanted these investigations done which
involved a post mortem and a number of genetic tests. They seemed to have a good
understanding of the situation and developed a good relationship with the counsellor. The
pregnancy did not go to term and the woman delivered the fetus six weeks prematurely.
The baby was born and passed away after a few hours. Further investigations were not
done. The woman did not want to discuss it with the counsellor and after being referred to
her partner it emerged that the family did not agree to further tests being performed. The
partner said he tried to explain the importance to their parents but that they did not give
their permission. The case brought up several questions but most importantly what could
the genetic counsellor do during the session to facilitate the process for patients and their
families? The paucity of knowledge about our patient‘s perceptions and needs, coupled
with the highly technical and sophisticated concepts associated with genetic medicine,
make the genetic counselling session very complex and challenging. It leaves me, as a
genetic counsellor, feeling somewhat unsure and dissatisfied with what I am able to offer
to patients. As a result of this lack of detailed knowledge, I wanted to undertake research
that would make a contribution to our understanding of the practices of genetic counselling
5 Chapter 1 Introduction
in our setting. As I started researching the subject I was drawn to studies utilising
qualitative methodologies as these seemed to provide very valuable information. In
particular, studies examining the actual interactions were very interesting to me as I
perceived these to provide fascinating and new perspectives. As a result, I refined my
original thoughts and questions (as illustrated by the case vignette) to focus my study on an
examination of the genetic counselling interactions from a sociolinguistic perspective.
The thesis consists of 10 chapters. Chapters two to four provide a discussion of the
literature, the practice of genetic counselling, the history of the profession, the theories that
drove it and how the profession developed in South Africa. Research on interactions is
also explored. As relatively few process studies have been performed on genetic
counselling, literature regarding medical and counselling interactions is consulted as it
addresses a number of overlapping concepts and activities. Finally, it was also necessary
to describe the reports on intercultural communication and genetic counselling.
Chapter five describes the methodology selected to examine the interactions. As the study
aimed to investigate the genetic counselling interactions in a multicultural antenatal setting
qualitative approaches were selected, drawing on a number of methods best suited to reveal
the nuances and details of the interactions.
In Chapters six to nine the results, which are structured around an analysis of selected
phases revealed during analysis are discussed. The first section presents a description of
the overall structure of the session and thereafter, the results from openings, decision-
making and counselling segments are reported. These sections were selected for further
analysis as they were thought to be the most informative phases of these sessions. The
6 Chapter 1 Introduction
opening phase was where the agenda of the sessions was set; the decision-making
sequence was when the counsellor and the woman engaged in a discussion regarding
whether or not the test should be performed, and the counselling segments were selected
because the women took up more interactional space.
The final chapter, Chapter 10, contains the conclusions drawn from the findings and the
implications of these for genetic counselling in South Africa.
7 Chapter 2 The Practice of Genetic Counselling
2 Chapter 2 The Practice of Genetic Counselling
Genetic counselling as a practice has its beginnings in the early 1900s when the first
‗genetic advice‘ clinics were started in the USA and UK (Walker, 1998). At this stage
scientists advised people about having children with preferred characteristics. These early
advisory clinics were associated with the Eugenics movement. However, when Sheldon
Reed coined the phrase ‗genetic counselling‘ in 1955, it signalled a strong move against
associating human genetics and counselling with the Eugenics movement (Walker, 1998).
Including the word ‗counselling‘ was an attempt to illustrate that giving genetic advice was
not about telling people what to do or creating better people, but rather about emphasising
the supportive and informative nature of the advice-giving process.
Today genetic counselling is an established practice, though young compared to medical
practice. Several theories and philosophies have contributed to the way genetic counselling
is practiced, but it is still considered ‗a profession in search of itself‖ (Veach, Bartels, &
LeRoy, 2002, p. 187). In this chapter, the practice of genetic counselling is discussed by
highlighting some of the theories and philosophies that have guided the profession, the
research that has contributed to our understanding and the attempts that have been made to
measure the success of the process. The development of the local genetic counselling
profession and practice will be discussed in the last part of the chapter.
2.1 Defining genetic counselling
Genetic counselling refers to a process whereby individuals and their families are informed
about the genetic and medical aspects of the relevant condition, in a way that supports and
8 Chapter 2 The Practice of Genetic Counselling
encourages decision-making and adaptation to the condition. The most well known
definition was coined by The Ad Hoc Committee on Genetic Counselling of the American
Society of Human Genetics (ASHG) in 1974 (ASHG Ad Hoc Committee on Genetic
Counselling, 1975). It states that:
―Genetic counselling is a communication process, which deals with the human
problems associated with the occurrence, or the risk of occurrence, of a genetic
disorder in a family. This process involves an attempt by one or more appropriately
trained persons to help the individual or family to:
Comprehend the medical facts, including the diagnosis, the probable
course of the disorder, and the available management
Appreciate the way heredity contributes to the disorder, and the risk of
recurrence in specified relatives
Understand the options for dealing with the risk of recurrence
Choose the course of action which seems appropriate to them in view of
their risk and the family goals and act in accordance with that decision
Make the best possible adjustment to the disorder in an affected family
member and/or the risk of recurrence of that disorder‖.
This definition has stood the test of time and it was not until 2006, with the advent of
genomic medicine and the increasing emphasis on psychosocial aspects, that an update was
necessitated. The task force of the National Society of Genetic Counsellors (NSGC) of the
United States of America (USA) then produced the following definition that is now widely
recognized and used by genetic counsellors (Resta et al., 2006, p. 78):
9 Chapter 2 The Practice of Genetic Counselling
―Genetic counselling is the process of helping people understand and adapt to the
medical, psychological and familial implications of genetic contributions to disease.
This process integrates the following:
Interpretation of family and medical histories to assess the chance of
disease occurrence or recurrence
Education about inheritance, testing, management, prevention,
resources and research
Counselling to promote informed choices and adaptation to the risk or
condition.‖
The process thus involves interpreting, assessing, educating, making choices and
counselling (Harper, 2010; Plunkett & Simpson, 2002; Walker, 1998). Gathering
information, by obtaining a family history and drawing a pedigree, reveals clues to
inheritance patterns and diagnosis. This activity is an important first step and aids in
establishing or verifying the diagnosis and/or indication for genetic counselling. Once a
diagnosis or indication is established, a risk assessment can be done and the patients and
their families can be given information about the condition and the associated risks. This
information can be used in decision-making. The emotional component of dealing with the
disorder is addressed by the counsellor, who makes use of counselling skills. The ‗steps‘
are fairly simple, but the nature of the interactions is highly complex, and, as the rest of the
chapter will illustrate, is far from being fully understood.
Genetic counselling is usually conducted by either clinicians with a specialty in Medical
Genetics, or Master‘s level trained genetic counsellors and/or experienced nurses with
10 Chapter 2 The Practice of Genetic Counselling
specialised training in Medical Genetics (Walker, 2009). However, in some situations,
genetic advice is provided by midwives, obstetricians and other medical specialists.
2.2 Goals and models of practice
Consensus still has to be reached with regard to the goal of genetic counselling.
Historically two main goals exist, ‗the prevention of birth defects and genetic disorders‘
and ‗client psychological well-being‘ (Biesecker, 2001, p. 323, 324). In prevention, the aim
is to provide patients with information (regarding preventing the disorder), and an
assumption is made that from understanding the scientific explanation, the patients will
make rational logical decisions in keeping with what the professionals consider rational
and logical. On the other hand, in the psychological well-being goal, the aim is to help the
patients cope with and adapt to their situation. This goal is based on accepting that patients
have fears and hopes, that they do not necessarily make rational decisions, that
understanding risk is a complex process, and that alleviating guilt is not always possible.
With these different goals in mind, different approaches or models of genetic counselling
have been proposed. The most well known are the Counselling and the Teaching models
described by Kessler (1997a). If the goal of genetic counselling is thought to be the
prevention of birth defects and genetic disorders, Kessler‘s Teaching model fits best, as
this model assumes that if patients are given information and they understand the
implications, they will make rational decisions. Such decisions would result in the best
possible outcomes – therefore preventing (or accepting) the birth of a child with a birth
defect or genetic disorder. If client psychological well-being is seen as the goal of genetic
counselling, Kessler‘s counselling model fits best as this model is based on the perception
11 Chapter 2 The Practice of Genetic Counselling
that patients come for genetic counselling for complex reasons such as validation, support,
and anxiety reduction. The counselling model emphases the importance of addressing the
client‘s fears, hopes, defences, and rationalisations in order to help them view their
situation as it is and makes choices that would best suit their situation.
Although the Teaching and Counselling Models have been cited most often in the
literature, Kenen and Smith (1995) proposed two other models for genetic counselling
practice: The ‗Mutual Participation‘ and the ‗Life History Narrative Model‘. These two
models are well accepted in the social sciences and fit with the goal of psychological well-
being. In the Mutual Participation Model participants have equal power, they are
interdependent, they engage in activities that are equally satisfying and they work as
partners. The client‘s experiences are important in making their decisions and are
integrated in the interaction. The Life History Narrative Model recognizes that clients
belong to families and do not exist within a vacuum. In this model the client is both
narrator and respondent and the counsellor is both interviewer and listener and the focus is
on encouraging the client to tell their story.
Biesecker and Peters (2001, p. 194) stated that ―no current consensus exists on the
definition of genetic counseling or its goals‖. Proponents of genetic counselling still have
to develop an empirical comprehensive model of practice (Fox, Weil, & Resta, 2007;
Veach et al., 2007). In such an attempt, Veach et al. (2007) conducted a workshop with
programme directors and genetic counsellors from North America with the aim of defining
the current model of practice. The outcome of the workshop resulted in defining the
‗reciprocal engagement model‘ as shown in figure 2.1: ―The model is represented visually
with a triangle that embodies the five tenets articulated by conference participants:
12 Chapter 2 The Practice of Genetic Counselling
Education primarily represents the tenet of genetic information. Individual attributes
reflects the tenets of patient autonomy, resiliency, and emotions. Relationship embodies
the tenet of counselor–patient relationship‖ (Veach et al., 2007, p. 724).
Figure 2.1. Reciprocal-Engagement Model of Genetic Counseling (Veach et al., 2007, p.
724)
While this model identified different components and showed that each has an effect on the
other, it does not provide guidance with regard to how its tenets and goals are to be
realised. This is not an easy process as Biesecker pointed out (2001, p. 192): ―Because
genetic counseling is a complex, dynamic and multi-faceted endeavor, it is a challenge to
demonstrate both whether and how it works‖.
13 Chapter 2 The Practice of Genetic Counselling
Practice has been based on the ideas put forward by Kessler‘s (1997a) models and to a
much lesser degree by those proposed by Kenen and Smith (1995). The emotional aspects
of genetic counselling have been regarded as important from the inception of the
profession; first, in the attempts to distance it from the Eugenics movement and later, in the
1970‘s, when Joan Marks developed the training programme at the Sarah Lawrence
College and included several modules on interviewing skills. However, a teaching model
has been promoted (Biesecker, 2003), and evaluations of practice show that counsellors
still adopt a teaching approach (Bernhardt, Biesecker, & Mastromarino, 2000; Ellington et
al., 2006; Hodgson, Gillam, Sahhar, & Metcalfe, 2009). The discrepancy between what is
done, and what is said is being done, demonstrates some disparity in theory and practice.
The difficulty in evaluating genetic counselling practices and whether the ‗correct‘
phenomena are being appraised is partially due to the lack of a clearly defined practice
model (Veach et al., 2007).
2.2.1 Genetic counselling sub-specialties
Whether it is advisable or possible to have a universal goal and practice model of genetic
counselling also needs to be considered as there are sub-specialties that differ with regard
to outcomes in a session (Biesecker, 2001; Kenen & Smith, 1995) and many different
factors have to be taken into account in each individual session.
Reproductive genetic counselling, or prenatal diagnosis counselling, involves pre-
procedure counselling, counselling following medically positive results and termination of
pregnancy counselling (Weil, 2000). Patients are faced with risks and choices about testing
options relating to having a child with a birth defect or genetic disorder (Biesecker 2001).
14 Chapter 2 The Practice of Genetic Counselling
Increased risks could be due to recurrent pregnancy losses, infertility, maternal age, or
positive carrier screening as a result of ethnic origin (Walker, 1998). The process entails
discussions about the risks and the choices available to cope with those risks, with the goal,
therefore being to assist the patient in exercising choices (Biesecker, 2001). The focus is on
decision-making and addressing the consequences of their choices. The type of decision
taken depends on individual personalities, cultural, ethical and religious beliefs and values
related to reproduction, parental responsibility, disability and termination of pregnancy
(Weil, 2000)
Where a child, adolescent or adult is affected with a genetic condition, the focus is on
providing them with information and helping them to adjust to the condition. Some
conditions only become evident after birth, childhood or in late adulthood (Walker, 1998).
These families are faced with the challenges of adapting to the condition and the issues
involved with genetic testing. Concerns around predictive testing and knowing their
genetic status before the onset of symptoms, are discussed with patients and their families.
Although reproductive choices come into play at some point, this is not the main goal of
the counselling. Rather, the goal is to facilitate patient understanding and acceptance in an
attempt to assist the patient to adapt to the diagnosis (Biesecker, 2001).
A relatively new area in genetic counselling is the area of ‗common diseases‘, some of
which, such as cancer and Alzheimer‘s disease, have been shown to have a genetic
component. In some of these conditions, genetic testing, which would indicate that the
individual‘s risk of developing the condition is increased is available. Here the aim in the
genetic counselling session centres on information-giving, risk perception and health
promoting behaviour. The goal in these sessions resembles that of other health education
15 Chapter 2 The Practice of Genetic Counselling
programs and includes facilitating the parents‘ understanding of personalised disease risk
and health-promoting behaviours (Biesecker, 2001).
The question remains as to whether all genetic counselling sessions, irrespective of the
nature of the indication (whether it is on decision-making, on acceptance or on
understanding of personalized disease risk), can have the same goal and whether it is
possible to have a universal model. This question is further complicated by the fact that
different service delivery models (Battista, Blancquaert, Laberge, Van Schendel, & Leduc,
2012; Cohen et al., 2012) and practice models (Veach et al., 2007) have been recognized.
In view of the fact that sessions have different goals depending on the reasons for the
patient seeking genetic counselling (Biesecker, 2001), and that there are different service
delivery models (Cohen et al., 2012) and varying practices in different settings (Cohen et
al., 2012) it seems unlikely that a universal model of practice can be developed.
2.2.2 Psychological theories
In the profession‘s attempts to distance itself from its Eugenics history, emphasising the
psychological aspects in the genetic counselling became important. The patients seen are
individuals who have unique personalities, coping styles, values, beliefs and defences
(Weil, 2000). They experience a range of emotions when faced with a genetic risk or
genetic condition, which has psychological significance for them. Because of the
emotional aspects, the profession has borrowed several theories and concepts from
psychology and social science (Djurdjinovic, 1998; Weil, 2000).
16 Chapter 2 The Practice of Genetic Counselling
The genetic counselling session is a short term intervention, typically one or two sessions
and occasionally a third and a fourth (Harper, 2010). As a result, some of the existing
psychological techniques have limited application for genetic counselling but they provide
a framework for understanding the depth of the patients‘ emotional responses
(Djurdjinovic, 1998). Freud‘s psychodynamic theory is such an example. In
psychodynamic theory, human behaviour is said to be determined by irrational forces,
unconscious motivations and drives, but by bringing the unconscious into the conscious,
one is able to free oneself to make choices about behaviour. It can be appreciated that to
apply Freud‘s principles effectively, long term interaction is required. A genetic counsellor
is unable to work effectively with the unconscious motivations and drives of a patient in a
single genetic counselling session. However, as Tassiker (2005) showed, psychodynamic
theory in predictive counselling and testing for Huntington Disease can help counsellors in
their work of preparing and assisting patients with adjustment.
A theory that is more amenable to genetic counselling practice is Carl Rogers‘ person-
centered approach (Djurdjinovic, 1998). Joan Marks, in developing the first genetic
counselling training programme at the Sarah Lawrence College in the 1970‘s, based the
programme on Carl Rogers‘ approach (Marks & Richter, 1976). As this approach is based
on the principles of genuineness, empathic understanding and unconditional positive
regard, it is attainable in the usually brief genetic counselling interaction.
Not only individual but also family dynamics need to be considered as a genetic condition
affects the whole family (Weil, 2000) as the family is a dynamic social system of
interacting individual personalities where each member has an effect on the others.
Further, a genetic condition in the family places extra stress as the family move from one
17 Chapter 2 The Practice of Genetic Counselling
stage to another. Family systems theories offer an understanding of how families function
and how they respond to critical life events (Djurdjinovic, 1998). Several theories have
relevance for genetic counselling such as the Family Systems Genetic illness model
(Rolland & Williams, 2005), which addresses how families cope with illness over time and
the unique challenges posed by being at risk and Deborah Eunpu‘s (1997) Systemically
Based Psychotherapeutic Technique which, in families with a genetic condition, links
individual, interactional and intergenerational issues. Another model, the stages of change
model of Prochaska and DiClemente was evaluated in Huntington Disease predictive
testing (Houlihan, 1999). The authors showed that their model was useful in building
effective communication and assist patients during the genetic testing process as it can
explain how patients change problem behaviour to positive health related behaviour.
As shown, there are a number of theories that have been proposed or adapted for genetic
counselling. Some have been evaluated while others have been put forward as models.
Individual theories have been evaluated in select sessions and settings suggesting the
complexity and multidimensionality of the genetic counselling process. This suggests the
difficulty of developing an all-inclusive model of practice and that there is no one ideal
method or model that can address all its facets.
2.3 Main elements as a basis for practice
2.3.1 Non-directiveness
A historically fundamental ethos of genetic counselling is non-directiveness. When and
how exactly non-directiveness was introduced into the field is uncertain (Weil, 2000;
18 Chapter 2 The Practice of Genetic Counselling
Wolff & Jung, 1995). It was initially an attempt to distance genetic counselling from the
Eugenics movement (Kessler, 1992). Also in the beginning, scientists who were providing
genetic counselling emphasized the neutral transmission of information rather than
following the traditional rules of advice-giving as practiced in doctor-patient relationships
(Wolff & Jung, 1995). As social workers and psychologists started working in the field,
they practised and encouraged non-directiveness. Another contributing factor was the
development of the first Masters programme for ‗Genetics Associates‘ at the Sarah
Lawrence College, New York (Marks & Richter, 1976).
The counselling skills component of the Sarah Lawrence course was founded on Carl
Rogers‘ person centered approach with its philosophy of non-directiveness (Rogers, 1942).
Rogers‘ theory states that people have the capacity to become self-aware, that they can
self-direct and actualize into whole, fully functioning individuals, and the counsellor‘s
attitude and the counsellor-client relationship determine the outcome (Weil, 2000). The
theory is based on three key counsellor attributes; unconditional positive regard, empathy
and genuineness. Rogers‘ definition of non-directiveness is that the client defines issues
and selects solutions and the counsellor assists the client in achieving these goals, while in
directiveness, the counsellor defines the problem and its cause for the client and proposes
clarification and solutions (Wolff & Jung, 1995).
The difficulty with the use of non-directiveness in genetic counselling is that the concept is
not well defined in this context and it is inconsistently presented in the literature (Kessler,
1992, 1997b; Weil, 2000; Wolff & Jung, 1995). It has been defined as a non-prescriptive
process where the genetic counsellor avoids giving advice or making recommendations
(Weil, 2000). The most obvious example being the counsellor‘s response to the question
19 Chapter 2 The Practice of Genetic Counselling
‗what would you do?‘ (Kessler, 1992, 1997b). A counsellor cannot completely avoid
answering this question as the counsellor‘s beliefs and/or attitudes are often conveyed by
non-verbal behaviour, by what information s/he gives and how it is presented. Attitude,
suggestions, value judgments and preferences focusing on particular aspects, and the order
of providing information can suggest preferred courses of action. As Weil argues, this
narrowly defined non-directiveness is not achievable in genetic counselling (Weil, 2003).
He provided four reasons: there is inadvertent directiveness that refers to the impossibility
that the genetic counsellor is value and attitude free; there is inevitable directiveness that
refers to the fact that genetic counsellors make decisions with regard to the information
they provide and the counselling approach they take; there is institutional directiveness that
refers to the fact that the offer of testing available gives the message that this is the
preferred option; and there is meta directiveness, which refers to the fact that there is
directiveness due to the choice of a particular approach. Kessler has also argued that
narrow definitions of non-directiveness are limiting and inhibit the genetic counsellor‘s
practice (Kessler, 1997c).
Non-directiveness, however, can be viewed as protecting patient autonomy (Hodgson &
Spriggs, 2005; Kirklin, 2007; Weil, 2000). From this perspective patients are required to
play an active self-confident role in the decision-making process, and counsellors should
make use of active counselling approaches and techniques, in order to support and promote
patient autonomy. Kessler (1997c) advocates this application of non-directiveness, as it is
more attainable in the practice of genetic counselling: ―Since the beginning, there has been
a second aspect of non-directive methods that practitioners recognized, namely their ability
to promote the autonomous functioning of the client. This aspect of ND is clearly
applicable to genetic counseling and I offer it as a definition: ND describes procedures
20 Chapter 2 The Practice of Genetic Counselling
aimed at promoting the autonomy and self-directedness of the client‖ (Kessler, 1997c, p.
166). Weil proposed that the ethos of non-directiveness be replaced by an ethos of
including the psychosocial component in the practice, ―The central ethos of genetic
counseling should be to bring the psychosocial component into every aspect of the work‖
(Weil, 2003, p. 207). The benefit of this is that such an approach would allow the genetic
counsellor to meet the fundamental role to assist patients to use the medical and scientific
information available to them to adjust to their situation.
Kessler (1992) further states that both directiveness and non-directiveness are strategies by
which the counsellor attempts to influence the patient. In directiveness, the counsellor
attempts to influence the patient‘s behaviour, and in non-directiveness the counsellor
attempts to influence how the patient thinks about the problem which will ultimately affect
behaviour and increase self-determining ability. He suggested that process studies be
performed in an attempt to understand how non-directiveness and directiveness manifest in
practice: ―We need to know the extent to which counseling philosophy and practice
intersect. Do what genetic counselors say they do relate to what they actually do in the
course of counseling? Study of the process of genetic counseling may be the only way to
answer this question and to clarify the operational differences and similarities between
directiveness and non-directiveness‖ (Kessler, 1992, p. 15). Clarke (1991) adds that social
structures influence the provision of non-directive genetic counselling in relation to
prenatal diagnosis and termination of pregnancy and suggests that the mere fact that
prenatal diagnosis is offered, implies a recommendation to accept that offer. Therefore,
irrespective of the counsellors‘ thoughts, wishes or intentions the encounter may be
partially directive.
21 Chapter 2 The Practice of Genetic Counselling
No consensus could be found among studies examining non-directiveness. Some found
counsellors to be directive (Michie, Bron, Bobrow, & Marteau, 1997), others that a non-
directiveness stance could not be maintained (Hallowell, 1999), while others identified
counsellor strategies used to maintain a non-directive stance (Benkendorf et al., 2001;
Sarangi et al., 2004; Zayts & Schnurr, 2011). Non-directiveness, as with the goals and
models of genetic counselling, has been based on theories developed in other disciplines.
As the profession developed over the years it has evolved and, as Weil (2003) suggested, it
may be time to remove the term ‗non-directiveness‘ from genetic counselling practice and
aim to bring more attention to the emotional aspects of the session, or, alternatively, decide
on a definition of non-directiveness in the context of genetic counselling.
2.3.2 Risk communication
Providing risk information is central to genetic counselling (Baty, 2009; Weil, 2000).
Patients may be at risk of having a child with a genetic condition, may have a risk of
spontaneous abortion associated with invasive testing, or there may be a risk to other
family members of having a genetic condition, or a risk of inheriting a genetic condition
and/or a risk of developing the familial genetic condition once the mutated gene is
inherited. Risk communication, however, is not as simple as providing a risk figure. How
risks are communicated, how patients perceive the risks provided and how they apply this
information in the decision-making process, is complex (Weil, 2000).
Research has found that the way in which professionals communicate risk information
varies (Fransen, Meertens, & Schrander-Stumpel, 2006; Henneman, Marteau, &
Timmermans, 2008; Lippman-Hand & Fraser, 1979; Michie, Lester, Pinto, & Marteau,
22 Chapter 2 The Practice of Genetic Counselling
2005). Some professionals use percentages or odds or rate risks as high or low, or use both
numerical and descriptive phrases, while others give both positive and negative risks and
some use the words ‗risk‘ while others use the word ‗chance‘. Counsellors‘ views on how
they present risks showed that preference varied depending on their training, experience
and abilities and the presentation is rarely based on literature on the subject (Henneman et
al., 2008). Counsellors reported that they tailor their risk presentation based on their
assessments of their patients‘ verbal and non-verbal responses and needs. Similarly from a
patient perspective, there is no consensus as to what is preferred (Baty, 2009; Lobb et al.,
2004). Some patients have a preference for being given numerical probabilities, whilst
others wanted qualitative probabilities or had no preference (Baty, 2009). A numerical risk
given as a one in X odds was most preferred and resulted in most accurate recall by women
at risk for breast cancer (Hopwood, Howell, Lalloo, & Evans, 2003). Hallowell et al.
(1997) found that in 40% of cases, risks were not provided in the patient‘s preferred
format. Hallowell (1999) also found that risk management options in breast cancer were
presented ‗non-neutrally‘.
A patient‘s risk perception varies according to context, their previous perception of the
risk, the desirability of the outcome, emotions associated with risk, personality, cognitive
ability, beliefs, values, culture and experience (Baty, 2009; Lippman-Hand & Fraser,
1979a; McAllister, 2003; Pilnick, 2004; Sivell et al., 2007; Weil, 2000). Patients have
prior beliefs about their risk; a concept Weil (2000) calls ‗anchoring‘. These beliefs affect
how they interpret the numerical risk given in genetic counselling. A patient would
perceive a risk of 25% as high if their prior belief was that they have a high risk and the
same risk would be perceived as low if their prior belief was that they have a low risk.
23 Chapter 2 The Practice of Genetic Counselling
Patients also perceive a given numerical as high if they have experienced the event and the
emotional impact has been difficult.
The theory of engagement explains how patients perceive their risks based on family
inheritance patterns and their engagement status (McAllister, 2003). Interestingly, if the
patient has an experience of a normal child they may perceive the numerical risk as low.
Weil (2000) describes this as ‗availability‘. In Weil‘s (2000) concept of
‗representativeness‘, couples perceive their numerical risk depending on whether they have
only a first child or more than one child together, their knowledge of population risks,
desire for certainty, perspective of themselves (optimistic or pessimistic), whether they
have pre-selected the individual as affected or unaffected, and their difficulty in
interpreting numerical values. Being at risk results in emotional responses. Patients find it
difficult to understand and quantify risk and they have a tendency to overestimate their
risks, which might adversely affect their health and lead to inappropriate uptake of medical
services (Sivell et al., 2007). In women at risk of breast/ovarian cancer, Bennett et al.
(2008) showed that anxiety and depression are often associated with cancer risk
assessment.
Based on the findings from research studies, professionals are advised as to how to present
risk information and how to assist patients to make their decisions. An extensive list of
recommendations based on a number of models or conceptual frameworks is available
(Baty, 2009; Smerecnik, Mesters, Verweij, Vries, & Vries, 2009; Veach, LeRoy, &
Bartels, 2003; Weil, 2000). Smerecnik et al. (2009), after undertaking a systematic review
of the topic, suggest that when counsellors offer patients risk information they should
provide them with the context in which to interpret their risk, with both verbal and
24 Chapter 2 The Practice of Genetic Counselling
numerical risk presentations and make use of visuals aids. Fransen et al. (2006) suggest
working according to a developed checklist.
Even though a long list of recommendations exists as to how counsellors should
communicate risk, we do not have a clear understanding of all the nuances. Austin (2010)
argues that research on risk communication has been ineffective as risk and probability
have been merged into one concept and that only numerical risk recall is generally
assessed. The author suggests ―… a more thorough and nuanced conceptualization of risk
perception, as a multifaceted entity comprising numerical probability, context, and
severity….‖ (Austin, 2010 p 233).
Research that can add to the understanding of risk communication includes studies, based
on qualitative measures, which examine how risk is communicated in interactions, as
shown by O‘Doherty (2006) in a study on cancer genetic counselling sessions. The author
found that there were distinctions between different types of risks and that the meanings
these have were dependent on the discursive context. Only very clear explanations, which
require a deep understanding of risks and probabilities on the part of the professional,
would result in patients understanding the given risk or probability. Similarly, in a study on
Huntington disease and cancer predictive sessions Sarangi et al. (2003) showed that the
different types of risks, the risk of inheriting (genetic risk) and the risk of knowing you are
at risk could become merged. Both patients and professionals use several strategies
(abstraction, reformulation, externalisation, localisation, temporalisation and
agentivisation) to escalate or de-escalate the risks. Sarangi (2002) also showed that
professionals‘ risk communication is affected by their attempts to maintain a non-directive
stance. As these studies have shown, examining how risks are communicated in practice
25 Chapter 2 The Practice of Genetic Counselling
has been every helpful in understanding risk communication and it has illustrated some of
the nuances Austin (2010) articulated.
2.3.3 Decision-making
As already alluded to, the premise is that individuals should be provided with information
regarding their risks, diagnosis and options, and, then, make their decisions (Fraser, 1974;
Shiloh, 1996). Informed choice has been defined by Marteau et al. (2001, p. 100) as ―An
informed choice is one that is based on relevant knowledge, consistent with the decision-
maker's values and behaviourally implemented‖. Closely linked to this premise, is the idea
of non-directiveness which places the responsibility for making a decision on the patient.
In a non-directive ethos, genetic counsellors take the role of facilitator and thereby help
―clients reach a decision wisely, rather than reach a wise decision‖ (Shiloh, 1996, p. 87).
The professional is encouraged to refrain from persuading the patient to take a particular
course of action, but allow them to come to a decision which is best for them in their
circumstances (Elwyn, Gray, & Clarke, 2000). Elwyn et al. recognised that there may be
some instances for example when a clinical recommendation or an ethical recommendation
is required, when a model of shared decision-making might be more helpful. Shared
decision-making centres on the principle that the patient and the professional share
information and their views on a particular issue and then come to a decision which is
acceptable for both and for which both take responsibility. Ahmed et al. (2012a, 2012b)
showed that many women want healthcare professionals to engage in a discussion and did
not see advice as a barrier to them making an informed decision.
26 Chapter 2 The Practice of Genetic Counselling
In genetic counselling sessions, patients are faced with a number of choices: whether to
have children, whether to have prenatal diagnosis, whether to terminate a pregnancy,
whether to undergo testing and at what age or stage this should this be done (Shiloh, 1996).
Decision-making is a complex process where patients have values and beliefs and different
decision-making styles which influence how they make a decision (Veach et al., 2003).
There are cultural and religious beliefs, and partners and other family members may
participate.
In the area of prenatal diagnosis, research has shown that the patient‘s intentions prior to
genetic counselling, as well as their experience of having an affected child, play a major
role in the decision made after counselling (Weil, 2000). In some situations the patient
chooses not to have a child because of the fear of having another affected child, while in
other instances, avoiding having a child with the same condition may devalue the life of
the affected child. The patient‘s attitude towards termination of pregnancy also plays an
important role: some patients might undergo prenatal diagnosis only because they would
request termination for an affected fetus and, in other instances, they would not terminate
an affected pregnancy but still want prenatal testing for the emotional preparation.
Lippman-Hand and Fraser‘s (1979; 1979a, 1979b) seminal work, on how patients resolve
problems and formulate their decisions with regard to childbearing, revealed the
complexities involved. They found it was crucial for women to limit uncertainties and
neutralize the consequences found most problematic (Lippman-Hand & Fraser, 1979).
Parents chose a course of action that they perceive as the ‗least lost‘. In deciding what
‗least lost‘ means, they consider their previous experiences, their perception of the risk and
the consequences. Patients might not use numerical numbers but rather binarize or
dichotomize risk figures into what will or will not happen and subsequently arrive at a
27 Chapter 2 The Practice of Genetic Counselling
decision (Lippman-Hand & Fraser, 1979a). Parents were reported to simplify their risk
and focus on the implications of being at risk, the meaning of having an affected child, the
uncertainty of how to make a choice, how this choice would be viewed and whether they
would be able to fulfil their role as parents. Decision-making in parents who have
experience of a childhood genetic condition is complex and uncertainties and obligations
of responsible parenting are weighed against possible reproductive choices (Kelly, 2009)
Other studies have focused on specific aspects, such as the role of information in the
decision-making process (Shiloh, Gerad, & Goldman, 2006), problems encountered after
reproductive decisions (Frets, Duivenvoorden, Verhage, Peters-Romeyn, & Niermeijer,
1991), the burden of disease, the effects of screening and decision-making in couples at
risk of having a child with retinoblastoma (Dommering et al., 2010), and autonomy in
prenatal screening (García, Timmermans, & Van Leeuwen, 2008). In another study,
women were found to be ambivalent about undergoing an amniocentesis as they reported
experiencing ambivalence between being responsible and their desire to protect their
pregnancy from harm (Sapp et al., 2009). In the area of genetic testing, research has found
that, for example, in familial breast cancer, the available management plays a role in
decisions regarding having or not having testing (Baty, 2009). In cancer genetic
counselling, the patient‘s sense of responsibility, not only to themselves but also to the
other family members, plays a major role (Etchegary et al., 2009). From a patient
perspective it was found that although couples wanted decision-making to be a shared
process they wanted to make the final decision (Carroll, Owen-Smith, Shaw, &
Montgomery, 2012).
28 Chapter 2 The Practice of Genetic Counselling
Research on the factors that influence patient decision-making is thought help genetic
counsellors and other professionals understand how patients make difficult choices and
that if the factors and complexities are understood, patients can be better assisted with their
decision-making (Baty, 2009; Veach et al., 2003; Weil, 2000). With this in mind,
researchers have developed decision-making aids or models (Baty, 2009; Veach et al.,
2003). These aids are standardized and evidence based and they can be in the form of
printed, video or internet based information that patients can access themselves, or that the
professional can discuss with them. They are aimed at helping patient‘s personalize the
information, emphasize patient participation in the decision-making process and help
patients communicate their values. Veach et al. (2003) suggested that regardless of the
decision-making model used, several strategies can be used to assist patients, such as
exploring their reasons, opinions, values and cultural variables and engaging them in
anticipatory activities. Similarly, Weil (2000) advocated assessing the counsellees‘
situation: their sources of difficulty; available options; emotional state; and the role
significant others play in the process.
Despite these techniques, a study on women‘s decisions to undergo an amniocentesis due
to an increased risk of having a child with a chromosome abnormality, found that the
professionals and the women had different goals regarding the testing (Hunt, De Voogd, &
Castañeda, 2005). Professionals were concerned about identifying and controlling
pathophysiology while the women were most concerned about protecting their
pregnancies. This emphasises again the difficulty of bringing theories into practices and
highlights the needs for studies on the actual interactions.
29 Chapter 2 The Practice of Genetic Counselling
2.4 The success of genetic counselling
What makes genetic counselling effective is still not entirely understood. Several outcome
measures have been considered in attempts to identify the success of the process. It is
assumed that a successful genetic counselling session will result in patient satisfaction, but
the relationship between these two concepts is not well understood.
Bernhardt et al. (2000) found that the counsellors and patients agreed that the goal of
genetic counselling is providing information, increasing knowledge, making opportunities
for decision-making and providing support.
Providing information, educating patients and information recall was thought to be an
important measure of the success of genetic counselling. Improvement in knowledge has
been shown by several authors (Braithwaite, Emery, Walter, Prevost, & Sutton, 2004;
Hunfeld et al., 1999; Michie, French, Allanson, Bobrow, & Marteau, 1997; Michie,
McDonald, & Marteau, 1997; Pieterse, Ausems, Van Dulmen, Beemer, & Bensing, 2005).
Michie et al. (1997) found an overall accurate recall of information of 78% in their study in
the UK, with information about family issues recalled more accurately than genetic or
medical information (Michie, French, et al., 1997; Michie, McDonald, et al., 1997). They
also showed that not all the information which the researchers thought important was
recalled four weeks after the consultation. Different types of information were recalled
differently, with clinical aspects generally accurately recalled (Hunfeld et al., 1999). There
were significant differences between perceived recollection and interpretations of test
results in cancer and between cancer risks and hereditary likelihood which were not
affected by actual communicated test information, experience of cancer and treatment,
30 Chapter 2 The Practice of Genetic Counselling
elapsed time, measuring risk in percentages and sociodemographic status (Vos et al.,
2011). It was shown that patients had a better understanding of the information and
increased satisfaction with the information given at the cancer genetic counselling clinic
when they viewed an information video before the consultation (Cull et al., 1998).
Improvement of knowledge was also demonstrated when culturally appropriate visual aids
were used together with phone based counselling (Pal et al., 2010).
While the amount of information given and communication styles have an effect on
psychological outcomes (Braithwaite et al., 2004; Lobb et al., 2004), there are no clear
correlations. In some instances women‘s anxiety was shown to decrease (Davey, Rostant,
Harrop, Goldblatt, & O‘Leary, 2005; Lobb et al., 2004), while other researchers found no
effect (Braithwaite et al., 2004; Michie, McDonald, et al., 1997). In one study on breast
cancer consultations, where there was more supportive communication, the women‘s
anxiety after the consultation was heightened (Lobb et al., 2004). However, facilitating the
women‘s understanding resulted in a decrease in depression (Lobb et al., 2004). Whether
patients are affected or not affected with cancer influenced their perceived risks and
anxiety levels (Metcalfe et al., 2010; Pieterse et al., 2005). However, where perceived
needs were met, the women had higher perceived personal control and lower anxiety
(Pieterse et al., 2005). Sending a summary letter also decreased anxiety, while
simultaneously increasing the accuracy of the perceived risk (Lobb et al., 2004).
The impact of genetic counselling on patient expectations, satisfaction, wellbeing and
perceived personal control has been investigated (Berkenstadt, Shiloh, Barkai, Katznelson,
& Goldman, 1999; Davey et al., 2005; Macleod, Craufurd, & Booth, 2002; Metcalfe et al.,
2010). Perceived personal control was improved when the condition involved a physical
31 Chapter 2 The Practice of Genetic Counselling
disability, as well as in self-referrals (Berkenstadt et al., 1999). Improved perceived
personal control was associated with high levels of satisfaction (Berkenstadt et al., 1999;
Davey et al., 2005). However, as might be expected there was no increase in situations
where a diagnosis could not be made and limited information and testing were available
(Berkenstadt et al., 1999). Patients felt somewhat relieved of their vulnerabilities when
they or the professionals were able to do something about the situation (Macleod et al.,
2002). If the patient‘s expectations were met, their anxiety levels were generally lower but
this was not necessarily associated with better outcomes and none of the variables
measured predicted expectations or satisfaction (Michie, McDonald, & Marteau, 1997;
Pieterse et al., 2005). In another study, patients felt their expectations regarding
information were met but that their expectations related to assistance with decision-making
and coping were not met (Davey et al., 2005). Different communication styles were found
to have an impact on patient outcomes of anxiety, depression, knowledge and satisfaction
(Lobb, Butow, Barratt, Meiser, & Tucker, 2005), and, although information
communication was fairly standard facilitation skills varied significantly. A further study
showed that counsellors and patients disagreed on their perceived expectations of genetic
counselling (Bernhardt et al., 2000), however, it was shown that identifying patient
expectations correctly could increase satisfaction (Davey et al., 2005). Physicians‘
attributes were also shown to contribute towards satisfaction and women were more
satisfied when the physician was seen as trustworthy, as an expert, self-confident and
decisive (Hunfeld et al., 1999; Macleod et al., 2002), while in cancer genetic sessions, a
discussion of prophylactic measures resulted in more women feeling that their expectations
were met (Lobb et al., 2004). Patient satisfaction has been linked to empowerment
(McAllister et al., 2008; McAllister, Dunn, & Todd, 2010). In McAllister et al. (2008)
grounded theory approach, empowerment was described as a belief system linked to
32 Chapter 2 The Practice of Genetic Counselling
feeling in control and having the autonomy in decision-making, understanding, accessing
services and looking to the future.
More recently, instruments have been developed which can be used in clinical practice as
well as in research. Various patient satisfaction tools were developed: one focused on
respect given and patient questions answered (Zellerino et al., 2009); another captured
constructs of empowerment, perceived patient control, decisional conflict and hope
(McAllister, Wood, Dunn, Shiloh, & Todd, 2011); while a third measured patient
backgrounds, needs and expectations (Peters & Petrill, 2011).
It is clear from the many studies and findings reported that a single validated all
encompassing tool for evaluating the effectiveness of genetic counselling does not exist
(Payne et al., 2008). Whether such a tool could be developed is debatable. What seems
important however, is how the communication occurs. Lobb (2005) showed that
significant differences existed between counsellors‘ communication skills, but what
accounted for these differences and how they affected outcomes could not be identified.
Both counsellors and patients agreed that ‗connecting‘ and a positive interpersonal
interaction was a measure of success (Bernhardt et al., 2000) and that the manner in which
the counsellor related to the patient was important in rating their satisfaction (Davey et al.,
2005). Examining the interactions between patients and counsellors can provide additional
information based on what occurs during the consultations. Kessler‘s (1981) analysis
alluded to a pivotal moment in the session in which the counsellor addressed an underlying
fear of the patient and that this seemed to have affected the success of the session. As
there is an emphasis on using findings which help counsellors tailor their sessions (Peters
& Petrill, 2011), drawing on both outcome and process studies might yield more relevant
33 Chapter 2 The Practice of Genetic Counselling
and informative results. Interactional research on the genetic counselling process is
discussed in chapter three.
An important point that needs to be considered is the application of the research findings in
the sections above in multicultural settings. Most of the work reviewed, was performed in
Western settings and the researchers drew on Western principles to formulate and assess
their findings. The composition of their subject groups was not always specified, and how
patients from different cultures perceived their risks or applied risk information in their
decision-making processes did not appear to be explored. Whether the use of decision aids
and the recommendations made by researchers are applicable to patients from different
cultures remains unclear. As Veach (2003) and Weil (2000) state that patients have
different cultural and religious beliefs and values and that these affect their decision-
making (Potter et al., 2008), it could be assumed that the applicability of Western
principles might be somewhat limited in patients from different cultures (Ahmed et al.,
2012a). There is some evidence with regard to cultural limitation from research in Hong
Kong that showed that decision-making in a prenatal context is affected by the health
context (Pilnick & Zayts, 2011; Zayts & Schnurr, 2011). Intercultural communication is
explored further in chapter 4.
2.5 Genetic counselling in South Africa
2.5.1 Health in South Africa
In 2011 the total population of South Africa was estimated at 51.8 million people of
diverse cultures and language groups (Statistics South Africa, http://www.statssa.gov.za).
The majority (79.5%) of the population was Black African, 9% was White, 9% was
34 Chapter 2 The Practice of Genetic Counselling
Coloured and 2.5% was Indian/Asian. Of the total population, 22% or 11 328 203 South
Africans live in the Gauteng province. There are 11 official languages, of which isiZulu
(24%) and isiXhosa (18%) are most common. Many different religions are practiced; these
include Christianity, Islam, Hinduism, and Judaism, to name a few. A large number of
people in the country are unemployed (25.5% as at third quarter 2012).
There are many disparities in health and access to health care in South Africa (Benatar
2004). South Africa has both public (State) and private funded healthcare services
(Kromberg & Jenkins, 2012; Penn & Watermeyer, 2012). The majority of the population
is dependent on State services, while only those with financial means can afford to belong
to a medical aid and to access private health care services (Kromberg et al., 2012). The
South African Government has, since 1994, attempted to address inequalities by
establishing a district-based system of Primary Health Care, nationalization of the health
laboratory services, regulation of health care professionals and reforming health
legislation. Several laws, some specifically attempting to improve women‘s heath, have
been passed: the Choice on Termination of Pregnancy Act; the National Committee for
Confidential Enquiry into Maternal Deaths; the National Contraceptive Policy; and the
National Maternity Care Guidelines (Adar and Stevens 2002). Despite these efforts,
change remains slow. There is still disparity between services offered in the private and
state sector and shortage of staff and allocation of resources remain a challenge. In 2008,
35% of medical practitioners and 40% of nursing posts in the public sector were vacant
(Kromberg et al., 2012). Health outcomes relating to maternal, infant and child health
have worsened (Chopra, Daviaud, Pattinson, Fonn, & Lawn, 2009) and maternal mortality
has doubled since 1990 (Blaauw & Penn-Kekana, 2010). Further social inequalities such
as poverty, negative attitudes towards women and girls, racial and other discrimination,
35 Chapter 2 The Practice of Genetic Counselling
disempowerment and the HIV/AIDS pandemic, remain some of the issues that South
Africa still faces.
Inequality is most evident in poor, rural and African patients who only have access to State
funded health care (Harris et al., 2011). Patients reported several barriers to accessing
health care, which included cost of service, cost of transport and travel distances,
disrespectful healthcare providers and a belief that care will be ineffective (Harris et al.,
2011). Patients have been shown in general to be passive participants in their healthcare
decisions and seemed to have high regard for doctors (Penn & Watermeyer, 2012). This is
partly brought on by the country‘s apartheid history. Further, policy change and
implementation programmes tend to dismiss the individuals involved in the
implementation and service delivery (Walker & Gilson, 2004). Barriers to service delivery
lie deeper than financial and staff shortages, with power relations and personal experience
of change playing a bigger role than expected (McIntyre & Klugman, 2003). These
oversights may have further contributed to the lack of improved health care.
HIV/AIDS remains a significant burden despite efforts to reduce the incidence. South
Africa is reported to have the highest incidence and prevalence rates of HIV/AIDS in the
world (Doherty and Cohen 2006). It is estimated (midyear 2011) that there are 5.4 million
people living with HIV in South Africa (Karim, Churchyard, Karim, & Lawn, 2009). The
prevalence estimate for HIV positive women attending antenatal clinics is 29%.
HIV/AIDS affects not only the already strained health system, but also the South African
economy as the illness affects people in the most productive age group. The condition
accounted for 38% of total life-years lost from premature death (47% females and 33%
males) (Benatar, 2004). An additional 25% of life-years lost are due to other
36 Chapter 2 The Practice of Genetic Counselling
communicable disease, maternal and perinatal conditions, nutrition deficiencies, associated
with poverty, and underdevelopment. The HIV/TB co-infection rate is estimated at 70%,
which results in a significant burden (Karim et al., 2009). It has increased the toll on the
already over-burdened health services, increasing workloads for health care workers, clinic
visits and hospital admissions.
The South African government‘s stance on HIV has resulted in delays in implementing and
promoting prevention campaigns (Benatar, 2004). South Africa has a National Strategic
Plan for HIV/AIDS that includes education, programs for the modification of sexual
behaviour and treatment of opportunistic infections (Benatar, 2004). However, many
obstacles inhibit introduction and maintenance: high prevalence of high-risk sexual
behaviour; extensive sexual violence against children and unemployed women; constraints
on financial and human resources; inadequate health care infrastructure; resistance to
adopting bottle feeding rather than breast-feeding; concern about the potential adverse
effects of antiretroviral-drug therapy in poor and nutritionally vulnerable populations;
concern about promoting drug resistance and fear of not meeting constitutional
requirements for equity.
Further, HIV/AIDS also has a direct impact on genetic counselling. The roll-out of
antiretroviral treatment to pregnant women, in an attempt to reduce maternal to child
transmission, may pose a risk of injury to the developing fetus (Chersich et al., 2006). It is
known that certain medication such as (Epilim and Warfarin) may cause abnormalities in a
fetus if the mother is exposed to these during pregnancy (Harper, 2010). These women
receive genetic counselling so that the risks and options can be discussed. The safety of
ARV‘s and extent to which they may cause fetal abnormalities, however, has not been
37 Chapter 2 The Practice of Genetic Counselling
established and HIV positive women need to be informed of their potential risks and
options. In addition, the risk of transmitting the HIV virus to the fetus is increased if the
woman undergoes a prenatal invasive test such as amniocentesis. Bee (2005), in a study
on HIV status in women of advanced maternal age (AMA) seen for genetic counselling,
found that more HIV positive women chose not to have an amniocentesis, compared to
HIV negative women, as they were concerned about the increased risk of transmitting the
virus to their fetus. Hospital policies now state that when an amniocentesis is performed,
an HIV positive woman is required to be on antiretroviral treatment to reduce the risk of
maternal to child transmission. As Bee (2005) found, unknown status or delays in starting
antiretroviral treatment may deter or delay the woman from having testing. This was seen
in one of the sessions in this research as the woman delayed having an amniocentesis
because she was anxious to find out what her HIV status was. With the pressures of HIV
and high infant mortality rates, the contribution of birth defects and genetic disorders to
poor health outcomes is seen as a low priority (Kromberg et al., 2012).
2.5.2 The development of Medical Genetics
Medical Genetics in South Africa started in the 1950‘s with the development of
cytogenetic laboratories and the South African Genetics Society (Greenberg et al., 2012;
Jenkins, 1990). In the late 1950‘s Professor L. Hurst, Professor of Psychiatry and
Professor P. Tobias, a Professor of Anatomy, at the University of the Witwatersrand,
offered the first genetic counselling services (Jenkins, 1990). In 1972 a Department of
Human Genetics was founded at the University of Cape Town and in 1975 a chair of
Human Genetics was created at the University of the Witwatersrand. Departments of
Human Genetics were later set up at the University of Stellenbosch and, in 1989, at the
University of Pretoria.
38 Chapter 2 The Practice of Genetic Counselling
By 1985, there were 14 clinics offering genetic counselling in South Africa (Jenkins,
1990). In 1990, staff of the University of the Witwatersrand ran general genetics and
pregnancy counselling clinics, the University of Cape Town offered general genetics,
pregnancy counselling, Huntington Disease and an orthopaedic clinic and the University of
Stellenbosch staff ran general genetics, prenatal and paediatric clinics. In Durban, a
paediatrician with a special interest in medical genetics offered a service (general
paediatric genetics, and specialist clinics for Cystic Fibrosis and Spina Bifida) to patients.
A limited genetic counselling Service was also offered at the Medical University of
Southern Africa, the University of Pretoria and the University of the Free State. These
services were unevenly distributed and were concentrated around University based medical
schools with outreach within their provinces and occasionally to other provinces. In
addition to services being offered by academic departments, the Genetic Services Division
of the Department of National Health and Population Development (DNHPD) employed
genetics nurses who were distributed throughout the country. These nurses provided a
genetic service to patients living outside of the major academic hospitals in smaller towns
in various parts of the country (Jenkins, 1990).
Presently (2013), genetic counselling services are offered in four of the nine provinces of
South Africa: Gauteng, Western Cape, Free State and Kwazulu Natal, The departments of
Human Genetics staff at the Universities of Cape Town, Stellenbosch, Witwatersrand, Free
State, and paediatric staff at the Inkosi Albert Luthuli (Kwazulu Natal) and Steve Biko
Hospitals (Pretoria) (Greenberg et al., 2012). The universities offer a fully integrated
service with laboratory and clinical support, although the number of available staff and
genetic tests offered at the different centres varies greatly (Kromberg, Sizer, &
39 Chapter 2 The Practice of Genetic Counselling
Christianson, 2012). The genetic services division of the DNHPD was restructured in
1994 after which the genetic nurses were deployed in primary health care services. There
are currently only four genetic nurses actively involved in genetic counselling and they are
attached to two of the major academic centres and one hospital.
Genetic services were initially offered by scientists, medical doctors and nurses (Jenkins,
1990). Today services are provided by specialists in medical genetics, genetic counsellors
and the few genetic nurses. In 1990 there was a gross shortage of staff, with 20-40
consultants needed (as well as a shortage of posts for laboratory and clinical staff) and
unevenly distributed services. In 2012, the situation has hardly changed (Greenberg et al.,
2012; Kromberg et al., 2012). There continues to be a serious shortage of posts and staff
and the service is still unevenly distributed. The United Kingdom‘s report on Clinical
Genetic Services into the 21st Century recommended that two full-time clinicians and eight
genetic counsellors are required per 1 000 000 people of a population (Royal College of
Physicians 1996). By this standard, 100 clinicians and 400 genetic counsellors are
required in South Africa. With only 10 clinicians and five in training, and 18 genetic
counsellors with three more in training of which not all were practicing in 2012, the
country still has a serious shortage of adequately trained staff.
The demographics of the medical genetics staff are not representative of the South African
population. The majority of the staff is female (although there are three males) and from
the minority White population group (but there are two Black and three Indian Medical
Geneticists). These professionals are mostly conversant only in English, while very few
can converse in other languages (there are 11 official languages in South Africa). This
means that interpreters have to be utilised to assist with communication during the genetic
40 Chapter 2 The Practice of Genetic Counselling
counselling sessions. These interpreters are often nursing sisters in the ward, or family
members, other patients or non-medical hospital staff. There are no trained interpreters
dedicated to the clinics.
2.5.3 Development of a Master’s degree in genetic counselling training course
The first Master‘s programme was developed by Professor Jennifer GR Kromberg at the
University of the Witwatersrand in the late 1980‘s (Greenberg et al., 2012). In developing
the curriculum, Kromberg visited programmes in the USA, discussed their training and
observed their models. The curriculum initially consisted of five modules: Cytogenetics,
Biochemical Genetics, Medical Genetics, Genetic Counselling and a research project. The
course was a two year Master‘s degree in Medicine in Genetic Counselling (MSc (Med)
Genetic Counselling). The training included psychosocial theory, as well as counselling
skills training. In 2000, the curriculum was revised to cover three modules: Medical
Genetics, Principles and Practices of Genetic Counselling and a research report. In 2004 a
Master‘s programme in genetic counselling was started by Ms Patricia Craig and Professor
Jacquie Greenberg at the University of Cape Town (Greenberg et al., 2012). The
programme also runs over two years with three modules: Medical Genetics, Principles and
Practices of Genetic Counselling and a research report. The training and practice of genetic
counselling in both centres are based on the ‗Counselling Model‘ (Kessler, 1997a) and the
goal of ‗Client psychological well-being‘ (Biesecker, 2001) as described in previous
sections and counsellors receive extensive experiential training in counselling skills.
In the 1990‘s regulation of the profession was introduced and genetic counsellors were
required to register with the Health Professions Council of South Africa (HPCSA)
(Greenberg et al., 2012). Genetic counsellors were placed in the category Medical
41 Chapter 2 The Practice of Genetic Counselling
Scientists under the South African Medical and Dental Board. A number of scientists with
PhD or MSc degrees, who had been working in Human Genetics Departments providing
genetic counselling for some years, were registered under a ‗grandfather clause‘. Genetic
nurses were excluded. The first Master‘s trained genetic counsellor registered in 1998.
New regulations regarding the Scope of Profession, training and registration requirements
were promulgated in 2009 (http://www.hpcsa.co.za/). A professional group, Genetic
Counsellors-South Africa (GC-SA) founded in 2008, has developed professional
documents, which address the scope of practice, guidelines, intern training, exit
assessments and continuing professional development.
2.5.4 Genetic counselling in the Division of Human Genetics, Johannesburg
The first genetic counselling clinic of the Division of Human Genetics of the National
Health Laboratory Service (NHLS) (previously the South Africa Institute for Medical
Research - SAIMR) and the University of the Witwatersrand, was established at the
Transvaal Memorial Hospital (TMI) in 1972 (Jenkins, Wilton, Bernstein, & Nurse, 1973).
This clinic mainly provided a service to the white population in the Johannesburg area.
Later in 1987, a genetic counselling clinic was set up at Chris Hani Baragwanath Hospital
(CHB) (Kromberg & Berkowitz, 1986; Kromberg & Jenkins, 1988) and provided a service
mainly to patients from the Soweto area.
The genetic counselling service grew and clinics were set up in other state hospitals
(Charlotte Maxeke Johannesburg Academic and Rahima Moosa Mother and Child
Hospitals) and a private hospital in the Johannesburg area, as well as at smaller rural
hospitals through regular national outreach clinics. There were several clinics at these
hospitals covering antenatal, paediatric and adult cases as well as condition specific clinics,
42 Chapter 2 The Practice of Genetic Counselling
such as those for cystic fibrosis, haemophilia and breast cancer. However since 2009, the
service has had to be reduced as a result of a lack of staff. The Division currently runs five
weekly clinics.
The genetic counselling Service is provided to patients from all the population groups in
South Africa. On average, about 80% of the patients seen are from the State sector. In
2012, just over 2000 patients were counselled by staff of the Division.
The staffing of the Division has decreased drastically due to shortages of posts and, at
present, there are seven clinicians, while at the time of the data collection for the present
study there were nine clinicians and three registrars. Currently, the Division has three
genetic counsellors and three interns in training, while at the time of the data collection
there were five genetic counsellors, three interns and two genetic counselling students.
2.5.4.1 Advanced maternal age counselling
One of the main indications for genetic counselling at the Division is women of advanced
maternal age. It is well recognised that a woman‘s risk of having a baby with a
chromosome abnormality, especially Down syndrome, increases with advancing age
(Penrose, 1934). Since the 1960‘s, advanced maternal age (AMA) has been regarded as the
main indication for amniocentesis and prenatal diagnosis for chromosome abnormalities.
Different countries and centres have considered various different ages at which women are
regarded as being of AMA (Beekhuis, De Wolf, Mantingh, & Heringa, 1994). Locally,
women at or over the age of 35 years are considered to be of AMA. The cut-off is based on
the risk of having a child with a chromosome abnormality being approximately the same as
the risk of losing the fetus due to an invasive prenatal genetic test (Harper, 2010). This is a
43 Chapter 2 The Practice of Genetic Counselling
purely statistical cut-off level designed to ensure maximum pick-up and a low false
negative rate.
The risk to these older women is for having a child with a chromosome abnormality, more
specifically a trisomy (Harper, 2010). Trisomy occurs when there is inaccurate segregation
during meiosis, a process called non-disjunction, which results in an extra chromosome (47
instead of 46 chromosomes) during gametogenesis. Although this error can result in an
extra chromosome in the sperm or egg, the risk is higher in oocytes of women of AMA.
Non-disjunction can occur with any of the chromosomes, but trisomy 21 (Down
syndrome), Trisomy 13 (Patau syndrome), Trisomy 18 (Edwards‘s syndrome) and
abnormalities of the X and Y chromosomes are the only viable aneuploidies. Other
aneuploidies and most structural chromosome abnormalities are non-viable and mostly
result in first trimester spontaneous abortions.
A woman‘s risk of having a baby with one of the common trisomies increases with age
with the risk being around 1 in 1000 at 30 years, 1 in 500 at 35, 1 in 100 at 40 and 1 in 10
at 50 (Harper, 2010). Screening based on age alone has a low pickup rate and as medical
knowledge advanced, biochemical markers were found to be associated with trisomy
pregnancies (Wald et al., 1988). Later, in the 1990‘s ultrasound markers were found to be
even more sensitive in screening for babies with chromosome abnormalities (Nicolaides,
Azar, Byrne, Mansur, & Marks, 1992) (Table 2.1).
44 Chapter 2 The Practice of Genetic Counselling
Table 2.1. Screening for chromosomal disorders.
Table 2.1 is a summary from the articles by (Benacerraf, Neuberg, Bromley, & Frigoletto,
1992; Centini et al., 2005; Nicolaides et al., 1992; Spencer, Spencer, Power, Moakes, &
Nicolaides, 2000; Wald et al., 1988) on the detection rate using various screening methods.
To identify women at an increased risk of having a baby with a chromosome abnormality,
the ideal screening currently is to combine first trimester biochemical markers and
ultrasound screening (nuchal translucency) (Spencer et al., 2000). This is however only
available to patients accessing the private health sector in South Africa. First trimester
nuchal translucency screening became available in Gauteng Province in tertiary hospitals
in about 2003 (Naidoo, Erasmus, Jeebodh, Nicolaou, & Van Gelderen, 2008), and women
who present to an antenatal clinic in one of these hospitals in their first trimester will be
able to have a first trimester nuchal translucency screen. However, few women are
referred for genetic counselling early enough in their pregnancy to have this undertaken
(Watcham, Schön, & Christianson, 2007) and the state services does not offer biochemical
testing.
Markers Detection rate
Maternal age alone Maternal age ≥35 years ~40%
Biochemical markers Second trimester triple screen
- ß-HCG
- Oestriol
- Alpha-fetoprotein
~60%
Ultrasound markers First trimester nuchal translucency screen (11-13w)
- Absent nasal bone
~90%
Second trimester fetal anomaly scan (18-23w)
- Soft markers such as nasal hypoplasia,
increased nuchal fold
~80%
Ultrasound and
biochemical markers
First trimester nuchal translucency Screen (11-13w)
- Absent nasal bone
- ß-HCG
- PAPPA
>95%
45 Chapter 2 The Practice of Genetic Counselling
The options available to a woman of AMA in her second trimester to manage the increased
risk are ultrasound (to detect major fetal anomalies) and invasive prenatal testing. Detailed
ultrasound can be performed between 18-23 weeks to screen for ultrasound markers.
Several ultrasound markers have been found to be associated with a fetus with a
chromosome abnormality, however these markers are also sometimes found in normal
fetuses. Thus finding these markers is not diagnostic, but indicates that the woman is at an
increased risk of having an affected infant. Amniocentesis, obtaining a sample of the
amniotic fluid from the uterus, is a diagnostic procedure offered to women to confirm
whether or not their fetus is affected. The procedure is ideally performed between 16 and
20 weeks of pregnancy, but in the local setting is performed up to 24 weeks and it carries a
spontaneous abortion risk of less than 1%.
Genetic counselling for a woman with AMA involves explaining the concepts of
chromosomes, non-disjunction, ultrasound, amniocentesis, the risk of having a baby with a
chromosome abnormality, the risk of procedure related spontaneous abortion and the
option of termination of pregnancy. Counselling involves education techniques, and using
a range of counselling skills to assist women to use the information provided to make a
decision regarding amniocentesis and to provide her with support regarding her choices.
The uptake of amniocentesis has been shown to be around 30% in Cape Town (Urban,
Stewart, Ruppelt, & Geerts, 2011) and in Johannesburg (Wessels, unpublished data from
2003/4). The reasons women have given for not wanting to have an amniocentesis
undertaken were: she would not terminate an affected fetus (21%); or that she needed to
discuss the matter with a partner/family before making a decision (21%), or she was
concerned about the miscarriage risk (20%). The low uptake rate and reasons for not
46 Chapter 2 The Practice of Genetic Counselling
wanting an invasive procedure are not fully understood and consequently the service
provided to these women may not meet their needs entirely.
2.6 Summary
In this chapter genetic counselling as a practice has been described. Genetic counselling
was first introduced internationally in the 1940s and it involved educating patients about
the medical and scientific aspects of a genetic condition or risk, as well as decision-making
and psychosocial support. Several philosophies and psychological theories borrowed from
other disciplines, mostly social science and psychology, have guided the profession. The
fragmented approach, as well as the lack of consensus with regard to its goals, has
contributed to genetic counselling being without a distinct model of practice and still being
viewed as a profession in search of itself. Research has found that many of the ideals held
by professionals are not evident in practice or that they are inconsistently achieved.
The South African health care context and a brief history of the local development of the
genetic counselling profession and its current practices with particular reference to
advanced maternal age counselling have also been discussed. Advanced maternal age
counselling constitutes about 15% of the total cases seen by genetic counsellors and
involves education and counselling related to a woman‘s increased risk of having a baby
with a chromosome abnormality. The development and training of genetic counselling in
South Africa was based initially on programmes from the USA and there are a number of
difficulties with regard to providing the service.
47 Chapter 3 Interactional Research
3 Chapter 3 Interactional Research
Research on genetic counselling interactions, examining the discourses in process
(interactional research), gained momentum towards the late 1990‘s. Prior to that very little
research, except for case discussions with informal methodologies had been conducted. In
this chapter the findings of research focussing on examining interactions are considered.
The research in the present study aimed to understand structural, interactional and analytic
features of the sessions and did not aim to investigate specific phenomena. As a result the
literature review in this chapter is structured to present a broad overview of genetic
counselling process studies, which allowed the researcher to gain a general idea of the
features investigated.
Genetic counselling is considered a hybrid activity as it combines the elements of
traditional medical encounters and psychosocial counselling encounters (Sarangi, 2000).
As a result comparisons between genetic counselling and other counselling interactions
seem worthwhile. In light of this, selective findings from research in general medical and
counselling interactions are also discussed in this chapter.
3.1 Overview of interactional research on genetic counselling encounters
To the best of the researcher‘s knowledge, the first attempts at examining the genetic
counselling process were in the 1980‘s by Kessler (1981), Kessler and Jacopini (1982) and
Rapp (1988). These investigations were based on informal methodologies used in
antenatal genetic counselling session/s. Kessler (1981) commented on a transcript and with
Jacopini (1982) used Bales scoring to analyse a transcript. Rapp (1988) made comments
48 Chapter 3 Interactional Research
based on observing sessions. Since these early attempts, more research has been conducted
utilising more formalised methodologies in different genetic counselling settings and
different study populations.
The predominant specialities investigated, included prenatal genetic counselling
(Benkendorf et al., 2001; Browner, Preloran, Casado, Bass, & Walker, 2003; Gordon,
Prince, Benkendorf, & Hamilton, 2002; Hodgson et al., 2009; Hunt et al., 2005; Kessler,
1981; Marteau, Slack, Kidd, & Shaw, 1992; Pilnick, Fraser, & James, 2004; Pilnick, 2004;
Pilnick & Zayts, 2011; Roter, Ellington, Erby, Larson, & Dudley, 2006b; Zayts & Schnurr,
2011) and cancer genetics (Butow & Lobb, 2004; Duric et al., 2003; Ellington et al., 2005,
2007; Ellington et al., 2006; Hallowell, 1999; Lobb et al., 2002; O‘Doherty, 2006; Pieterse,
Dulmen, Ausems, Beemer, & Bensing, 2005; Pieterse, Dulmen, Beemer, Bensing, &
Ausems, 2007; Roter et al., 2006b). The specialty of prenatal genetic counselling
represents a large proportion of the work in genetic counselling, and it is thus not
surprising that a large number of studies are conducted in this area. Investigating the
genetic counselling process in a prenatal setting is very valuable, as it allows for the
examination of risk discussion and decision-making which are central aspects in most
genetic counselling sessions, irrespective of the indication.
With the discovery of genes for breast cancer and the subsequent introduction of cancer
genetics, a number of studies examining cancer genetic counselling sessions appeared.
This research contributed to the understanding of other aspects of the genetic counselling
process, such as risk management. A few studies examined paediatric and adult genetic
counselling sessions (Armstrong, Michie, & Marteau, 1998; Babul-Hirji, Hewson, &
Frescura, 2010; Lehtinen & Kääriäinen, 2005; Lehtinen, 2005, 2007; Pilnick, 2002;
49 Chapter 3 Interactional Research
Sarangi & Clarke, 2002; Sarangi, 2002; Sarangi et al., 2004, 2003; van Zuuren, van Schie,
& van Baaren, 1997) and revealed other aspects, such as how information is provided and
how a genetic or possible genetic diagnosis is addressed. However, the areas of paediatric
and adult genetic counselling sessions remain under investigated.
In the vast majority of the process studies in genetic counselling initial or first sessions
were examined, with only a few investigating second or follow-up sessions (Ellington et
al., 2007; Sarangi et al., 2004; van Zuuren et al., 1997). First and follow-up sessions have
different features; a first session will typically involve information gathering, while a
second session will involve very little, if any, and focus more on the diagnosis. It can thus
be assumed that by investigating different types of sessions different features of the genetic
counselling process will be revealed.
As shown in the previous chapter, genetic counselling or genetic advice may be offered not
only by genetic counsellors, but also by other professionals i.e., medical geneticists,
genetic nurses, and midwives and other clinicians who may give genetic advice. As an
introduction to their definition of genetic counselling, Resta et al. (2006) commented that
the definition is for ‗genetic counselling‘ and not for ‗genetic counsellors‘. Whether
interactions conducted by professionals other than genetic counsellors are a true reflection
of ‗the genetic counselling process‘ is a valid question. Smets (2007) suggested that there
is not much difference between the approach of genetic professionals and non-genetic
professionals, as both share the principle of a patient-centered approach, have the same
difficulties in eliciting a patient agenda and aim to enhance patient understanding.
However, whether genetic counsellors and midwives practice a patient-centered approach
in the same way, given the differences in their training and experience, is debatable. A
50 Chapter 3 Interactional Research
number of studies examined the genetic counselling process when conducted by midwives
(Marteau et al., 1992; Pilnick et al., 2004; Pilnick, 2004; Pilnick & Zayts, 2011) and
clinicians (Gordon et al., 2002; Pieterse et al., 2005, 2007; Pilnick & Zayts, 2011; Sarangi
& Clarke, 2002; Sarangi, 2002). Some specifically examined sessions conducted by
genetic counsellors (Armstrong et al., 1998; Benkendorf et al., 2001; Browner et al., 2003;
Ellington et al., 2005; Ellington et al., 2006; Gordon et al., 2002; Hodgson et al., 2009;
Sarangi et al., 2003). Others made no distinction between the counselling offered by
medical geneticists and genetic counsellors (Babul-Hirji et al., 2010; Butow & Lobb, 2004;
Duric et al., 2003; Ellington et al., 2007; Hunt et al., 2005).
Investigations into the genetic counselling process have used a number of different
methodologies: as discussed, the first studies involved subjective comments on sessions
(Kessler, 1981; Rapp, 1988) and later, sessions were observed and themes identified from
the session transcripts (Gordon et al., 2002; Hallowell, 1999; Hodgson et al., 2009;
Marteau et al., 1992; van Zuuren et al., 1997). These methodologies were valuable as they
provided insight into the poorly understood genetic counselling process. However, more
formalised methodologies were required and quantitative methods, including the Roter
interactional score (RIAS) were developed. The RIAS involved scoring the sessions
according to the information given and the amount of talk time by the counsellor and
patient (Butow & Lobb, 2004; Ellington et al., 2005, 2007; Ellington et al., 2006; Lobb et
al., 2002; Pieterse et al., 2005, 2007). This work contributed to quantifying what, and how
often, certain elements occur during genetic counselling interactions. This overall
description was necessary and helpful, but further investigations, examining the detail of
the interactions were needed. Studies based on socio-linguistic methods, such as discourse
analysis, allowed an in-depth examination of the session dynamics and tensions and an
51 Chapter 3 Interactional Research
examination of what the talk is doing rather than what the talk is about. This dimension
provided a different perspective on the process of genetic counselling and made a
significant contribution to the understanding of the process. These insights are discussed
further in the following sections.
3.2 Structure in interactions
3.2.1 Overall structure
Genetic counselling sessions have been shown to have an overall structure (Armstrong et
al., 1998; Babul-Hirji et al., 2010; Butow & Lobb, 2004; Hodgson et al., 2009). Sessions
with pregnant Australian women, who have had genetic counselling because of a positive
maternal screen for fetal anomalies, were found to comprise openings, screening test
dialogue, diagnostic testing dialogue, explanation of the conditions being tested for and
closings (Hodgson et al., 2009). Genetic counselling sessions with parents of children with
a genetic disorder were found to consist of an opening, information gathering, scientific
information, information delivery and a counselling phase (Babul-Hirji et al., 2010). In
cancer sessions, the opening sequence consisted of determining the woman‘s reason for
attending the session, then a family and personal history of cancer was collected, a
discussion of the roles of genes and chromosomes in cancer development, and an
explanation of the risks (Butow & Lobb, 2004). Psychosocial aspects were addressed at
any time during the sessions. In new sessions with patients who might have genetic
problems, the structure was described in terms of phases: an initial highly structured phase
in which greetings were followed by drawing a family pedigree (Armstrong et al., 1998);
and a second phase which was less controlled when the patient engaged with the genetic
52 Chapter 3 Interactional Research
information. These studies, although they did not reveal the detail of how sessions were
structured, showed that there were different phases. Specific structural features have been
revealed in medical encounters that were made possible because of the use of
sociolinguistic methodologies. This information allows comparisons to be drawn between
medical and genetic counselling sessions.
Various studies found that the overall structure, shown in genetic counselling sessions,
resembles what is described in medical encounters (Byrne & Long, 1976; Heritage &
Maynard, 2006; Waitzkin, 1991). In their study, Byrne and Long (1976) found a typical
medical encounter to contain a number of events: (i) establishing a relationship (ii)
attempts at discovering the reason for attendance (iii) verbal and/or physical examination
(iv) considering the condition (v) treatment or further investigation and (vi) termination.
Similarly, Waitzkin (1991) described the structure as: (i) chief complaint, (ii) present
illness, (iii) history taking (past, family and social), (iv) systems review, (v) physical
examination, (vi) other investigations, (vii) diagnosis and (viii) plan. Heritage and
Maynard (2006) similarly found acute primary care medical visits to consist of: opening,
presenting complaint, examination, diagnosis, treatment and closing.
A striking difference between counselling interactions and medical encounters were that
the former were more fluid (Labov & Fanshel, 1977; Sheon, Lee, & Facente, 2010;
Silverman, 1997). In their study on therapeutic discourse, Labov and Fanshel (1977)
described the interaction as an artificial structure which is derived from sudden shifts of
topics. In Human Immunodeficiency Virus (HIV) pre-test counselling sessions, a flexible
structure was also found. It consisted of medical history taking (or rather what resembles a
medical history taking), followed by discussion about sexual matters and then information
53 Chapter 3 Interactional Research
delivery (Silverman, 1997). Dreaded issues were introduced later on in the session and the
session concluded with discussions about the availability of the test result. Sheon (2010)
found that HIV counselling sessions (with men in the USA) consist of several tasks,
namely: counselling (client speaks more than the counsellor in one turn), information
delivery (risk assessment and health communication), data collection (standard survey
regarding risk behaviour required by the particular institution) and sample collection (oral
fluid swap and rapid test). These tasks were quantified by mapping when and how often
each occurred in the session. It was found that they did not occur in a strict order and when
the data collection task was removed from the session, the time the counsellors spent on
counselling increased (Sheon et al., 2010).
It was particularly useful to consider HIV sessions due to the similarities between the
process of genetic counselling and HIV counselling. The aims in HIV testing and
counselling were reported to be to: prevent HIV transmission; and to support the individual
affected with the condition (Chippindale & French, 2001). During the process the
individual is provided with information regarding testing, so as to promote informed
choice, information is obtained with regard to high risk behaviours, and patients receive
support during the testing process. Counselling, both with individuals and couples, is
required to assist the patient (and partner) to adjust to the news, if positive, as well as to
promote low risk behaviour. These elements are present in genetic counselling interactions
except that the focus is on a genetic condition. It was further thought to be worthwhile
because HIV has high incidence in Africa, and particularly South Africa (as demonstrated
in Chapter 2), and the counselling is provided to a very similar socio-cultural group as that
using genetic counselling services.
54 Chapter 3 Interactional Research
It is clear from the research discussed above that order exists in institutional discourses.
This is what distinguishes such discourses from everyday talk and informal conversations.
This order, however, varies according to the types of encounters as shown in counselling
and medical interactions (Heritage & Maynard, 2006). Such overall descriptions are
valuable as they provide an overview and a context for the interactions. Although it is
important to have an overview, closer examination focused on specific aspects is also
required in order to gain a more detailed understanding of the nature of interactions.
3.2.2 Interactional structure
Socio-linguistic studies, specifically conversational analysis, have revealed interactional
structures of the talk, such as how one action leads to another (referred to as sequence
organisation) (Schegloff, 2007). The sequences in genetic counselling interactions have
been found to be diverse (Babul-Hirji et al., 2010; Lehtinen & Kääriäinen, 2005; Sarangi,
2000). Babul-Hirji (2010) found that question and answer sequences, typically found in
medical interactions, occurred during sections of the session in which the genetic
counsellors‘ ‗voice of efficiency‘ predominated and that open-ended, yes/no and polarized
questions were often used. In contrast, during phases where the genetic counsellors
provided information (‗voice of educator‘), the discourse was characterised by long
monologues by the counsellors with acknowledgment tokens used by the patients (Babul-
Hirji et al., 2010; Lehtinen & Kääriäinen, 2005; Lehtinen, 2005; Sarangi, 2000). Yet
another sequence was identified during a phase which was termed the genetic counsellors
‗humanistic voice‘ (Babul-Hirji et al., 2010). During these phases the patients talked while
the counsellor limited her/himself to using minimal and supportive acknowledgments.
55 Chapter 3 Interactional Research
Much of this resembles the typical structure of medical encounters which has been
described as a repetitious question – response – interpretation sequence (Mishler, 1984;
Robinson & Heritage, 2005; Robinson, 2006; Robinson, 1998). Mishler (1984, p. 76) calls
the structure of medical encounters ‗the basic structural unit of discourse in medical
interviews‘. It was found that different question designs were used, most obviously open
and closed ended questions. Question designs in medical encounters however are more
complex than this and subtle changes are designed to elicit different information, such as
gloss-for-confirmation, symptoms-for-confirmation questions (Robinson & Heritage, 2005;
Robinson, 2006) and perspective display series (PDS) (Maynard & Frankel, 2006;
Maynard, 1991). Question/answer sequences are not the only format in medical
encounters; narratives of discovery where the patient talks and doctors acknowledge
(Halkowski, 2006), and patient explanation followed by the doctor‘s con/disconfirming
(Gill & Maynard, 2006) were also described.
Similarly in HIV counselling, different communication formats exist. The interview
format, in which the counsellor acts as the questioner and the patient acts as the answerer,
and the information delivery format in which the counsellor is the speaker and the patient
is the recipient (Silverman, 1997). Although such main formats exist, there were found to
be departures from it, such as when questions were initiated by patients. These were
characterized by the roles being reversed so that the patient became the questioner and the
counsellor became the answerer. Patients were also found to make conversational
contributions which were characterized by the patient taking on the role of the speaker and
the counsellor the recipient. These two basic formats can be distinguished in the HIV
counselling sessions and take on specific characteristics depending on the topic
(Silverman, 1997). When ‗delicate objects‘ were discussed, counsellors showed empathy
56 Chapter 3 Interactional Research
by paraphrasing and repeating what the patient has said. In sections of the session, which
were termed ‗advice giving‘, the structure was found to be a combination of information
delivery formats, interview formats and combined sequences (Silverman, 1997). Similarly,
the structure of the discourse when counsellors needed to ‗give bad news‘ involved
perspective display sequences (Silverman, 1997).
In therapeutic interactions, the discourses were characterized as a ‗request for action‘
sequence (Labov & Fanshel, 1977). Such requests were found to be relatively neutral and
take on the form of challenges and eliciting narratives amongst others. The discourse
consisted of different levels, and interview styles could be distinguished from narratives
and discussions of everyday life (unemotional) and family life (emotional) (Labov &
Fanshel, 1977).
As seen from the literature, it is crucial that when attempting to understand and evaluate
genetic counselling interactions, the hybridity, comprising the interrelatedness of overall
structural characteristics and unique sequences of different phases, be taken into
consideration before any conclusions are drawn.
3.3 Analyses based on components identified from the overall structure
Although research has shown that genetic counselling sessions consists of specific phases,
analysis of the detail is sparse. Little is known about how the different phases of a genetic
counselling session are structured and how these may vary between different indications
for referral, different professional approaches, or different settings in which sessions are
carried out.
57 Chapter 3 Interactional Research
As discussed in the overview of previous research, it seems that genetic counselling
sessions may follow, more or less, a similar structure to that of other medical encounters.
According to one research group in the UK (Armstrong et al., 1998), the genetic
counselling session was opened with preliminaries such as greetings, after which the
family pedigree was drawn up. In another study on cancer genetic counselling sessions in
Australia, the most common opening sequences involved determining the reason for the
referral, followed by a discussion on the family pedigree and personal history of cancer
(Butow & Lobb, 2004). Rapp (1988) observed that the genetic counsellors in her USA
study set up the dialogue at the opening of the session by asking the patients (pregnant
women in this case) ‗do you know why you are here talking to me?‘. None of these studies
aimed primarily to investigate the opening sequence of genetic counselling sessions and as
a result did not provide detailed information regarding openings.
On the other hand, the opening sequence of the medical encounter has been researched in
depth (Byrne & Long, 1976; Heath, 1981, 1986; Robinson, 1998). Doctors and patients
establish ‗co-presence‘ (Robinson, 1998); greetings are exchanged, names are checked,
spatial and physical orientations are established, patients are seated and doctors read the
medical records and check their equipment (Heath, 1981; Robinson, 1998). Greeting and
identity check sequences consist of at least two-parts, the doctor‘s greeting or proposal
followed by the patient‘s greeting or confirmation or rejection of the doctor‘s proposal.
The extent to which greetings are exchanged was found to be affected by the number of
patients the doctor had seen before and how many were still waiting to be seen (Byrne &
Long, 1976).
58 Chapter 3 Interactional Research
Byrne and Long (1976) found that greetings differed depending on whether the doctor
remembered the patient and how accurate his medical records were. The nature of the
records affected the opening questions as doctors who knew the patient might have started
a session by telling the patient why they were there, for example, ‗now, you‘ve come for
that prescription?‘ compared to ‗you don‘t look like …., Miss umm umm‘, when the doctor
expected to see another patient. Direct questions were found to be a feature of doctors who
had short consultation times, while broad openings were typical of doctors who had fewer
consultations. Doctors were found to offer observations by remarking that a patient
seemed tense or looked like s/he had been crying. Some doctors were observed to
encourage patients to keep talking, and a very small percentage (7%) of doctors was found
to use silence for this purpose. These preliminaries precede what Heath (1981, 1986) called
getting into the ‗business at hand‘ or ‗soliciting presenting concerns‘.
Unlike medical encounters, in which different phases have been examined in detail, other
phases of the genetic counselling interaction, such as obtaining the family history or
closings have not been examined. Studies in genetic counselling, have focused on
examining specific activities such as establishing an agenda, communication of
information, risk communication, decision-making and non-directiveness.
3.4 Analyses based on specific phenomena in genetic counselling
interactions
3.4.1 Establishing the agenda
Most research on the opening of genetic counselling sessions has focused on the reason for
the visit or whether the patient‘s concerns were established. Results varied considerably,
59 Chapter 3 Interactional Research
and findings showed that genetic counsellors made no attempt to establish patient concerns
in some sessions while in others, patients‘ agendas were sought in 95% of cases (Butow &
Lobb, 2004; Pieterse et al., 2005; Smith, Michie, Allanson, & Elwyn, 2000). Smith et al.
(2000) found that, at the beginning of the session there was no negotiation of the patient‘s
concerns and that the clinician decided what needed to be discussed. This was based on
sessions from only one clinician, but these findings were in keeping with those from the
larger sample from which the particular clinician was selected. In addition, Butow and
Lobb (2004) who studied sessions with different clinicians, also found that setting the
agenda was counsellor/clinician driven. None of the studies provided more information
regarding how the patients‘ concerns were elicited. There might be different strategies
used by different professionals, and different strategies might be used depending on
whether the session is new or a follow-up.
When the patient and the counsellor/clinician agenda were ‗matched‘ the patients felt that
their expectations were met (Lobb et al., 2002; Shankar, Chapman, & Goodship, 1999).
Patients were more dissatisfied with the consultation when there was a lack of concordance
with regard to the concern (Michie, Weinman, & Marteau, 1998); in a third of cases, the
geneticist ascertained the patient‘s level and type of concern inaccurately and when
geneticists and patients were non-concordant the counsellors were more likely to think that
patients wanted information regarding risks. It is not known how narrowly the agenda
established at the beginning of the session was followed throughout the session (Pieterse et
al., 2005).
In medical encounters, both doctors and patients treat presenting current symptoms as
important when soliciting presenting concerns (Robinson, 2006). Both treat responses that
60 Chapter 3 Interactional Research
do not contain current symptoms as incomplete. When doctors‘ moved to gathering
information before the patient completed their presentation of current symptoms, the
patient treated this as an interruption (Robinson, 2006). In turn, when doctors did not
proceed to information gathering when patients completed their presentation of current
symptoms, the patient indicated that they had completed their presentation. Typically,
doctors initiated the stage of eliciting patient‘s reasons for attending the consultation with a
question. By doing this, the doctor sets the general topic, which is the patient‘s problem
(Mishler, 1984). The use of open ended or wh-type (what, where, when) questions was
found to be effective in eliciting patient concerns (Marvel, Epstein, Flowers, & Beckman,
1999; Mishler, 1984). However, Robinson (2006) and Heath (1981) showed that a closed
ended question in the right context can also be effective in soliciting concerns. Doctors use
different question formats depending on whether the visit is a first, follow-up or chronic
one (Robinson, 2006). First visit questions are understood to ascertain new concerns and
can be open or closed. Questions take on slightly different formats when the patient is
attending a follow-up visit. Doctors‘ questions communicate that they know something
about the patient‘s concern and that they are aware that it is not a new concern. When
eliciting chronic routine concerns, the questions are designed to indicate that the doctor
knows that the patient is there to discuss his/her chronic condition.
In their questioning, doctors show a preference for the use of specific types of questions,
such as question formats designed to elicit a ‗no‘-type response or a ‗yes‘-type response.
By asking the patient ―anything new?‖ which is designed to elicit a ‗no‘-type response, the
doctor is communicating that the patient is there to discuss the chronic condition and that
the doctor does not anticipate a new problem. Similarly using ―so what‘s new?‖ which is
61 Chapter 3 Interactional Research
designed to elicit a ‗yes‘-type response communicates that the doctor anticipates the patient
may have a new problem in addition to the chronic concerns.
There is some indication that neither doctor nor patient is open to presentation of a fuller
agenda (Barry, Bradley, Britten, Stevenson, & Barber, 2000). Doctors may not be
confident nor have the time to deal with the patients full agenda and patients may be
concerned about what is appropriate. The doctor‘s behaviour can prevent the patients from
voicing all their concerns resulting in an incomplete presentation of concerns. The reasons
for not completing their concerns included that they were not asked, or they were
redirected (Marvel et al., 1999). Redirections occurred by asking closed questions (―when
do you have the pain?‖), elaborators (―tell me more about the pain‖), recompleters (―the
pain‖) or statements (―the pain sounds serious‖) (Marvel et al., 1999). Similarly Waitzkin
(1991) also found that doctors commonly interrupted patients when they presented their
complaints. This prevents patient storytelling and as a result, some aspects of the illness
will be excluded from the consultation. The interruptions happen even though these issues
are important in the patient‘s experience. According to Waitzkin (1991) doctors may not
want to hear patient stories as they do not contribute to making a diagnosis, and the
patient‘s version of the story may be inconsistent or confusing, or the story may take too
much time and may evoke unpleasant feelings for either or both the patient and the doctor.
The patients‘ behaviour may also prevent complete solicitation of presenting concerns.
Patients are perceived to have limited autonomy in medical consultations as they may be
allowed to make requests, but may not be permitted to suggest solutions to the requests
(Barry et al., 2000). Patients voice only some aspects of their concerns, mostly the
biomedical aspects, while the unvoiced concerns are the psychosocial aspects. According
62 Chapter 3 Interactional Research
to Barry et al. (2000), in the medical consultation the patient is purely a biomedical entity
and they behave as they are expected to, rather than how they want to behave. Gender and
cultural values may affect the patient‘s willingness to verbalize concerns at the opening
and additional concerns may not occur to the patient until later in the consultation (Marvel
et al., 1999). Marvel et al. (1999) pointed out that it may not always be necessary to solicit
an exhaustive list of patient concerns at the beginning of the consultation as patients may
delay discussing emotionally laden topics until the doctor has earned their trust.
Setting an incomplete agenda is thought to be associated with fewer patient concerns being
elicited, more late arising concerns being voiced and missed opportunities to gather
potentially important information from the patient. Research, such as that conducted by
Marvel et al. (1999) and Robinson and Heritage (2005) provide insight into practice and
can lead to opportunities for training doctors to be more effective in eliciting presenting
concerns. Findings showed that doctors with more experience were more successful at
obtaining a complete agenda from the patient, and that with training, practice can be
improved (Marvel et al., 1999). The use of an open-ended opening solicitation or general
enquiry question, such as ―what concerns do you have?‖, followed by nondirective
facilitating utterances (also called surveying patient concerns) such as ―what else?‖ or ―uh
huh‖ repeatedly until all concerns were voiced, seemed the most useful technique (Marvel
et al., 1999; Robinson & Heritage, 2005).
3.4.2 Information giving
The fundamental activity, of providing patients with relevant medical and genetic
information in genetic counselling has been investigated by a few authors (Gordon et al.,
63 Chapter 3 Interactional Research
2002; Lehtinen & Kääriäinen, 2005; Lehtinen, 2005, 2007). During this activity, there
were attempts from the genetic professionals (clinicians) to ensure the patients‘
understanding (Lehtinen, 2005). Studies also examined how clinicians manage providing
information (Lehtinen & Kääriäinen, 2005; Lehtinen, 2007).
The clinicians were found to orientate toward ensuring that patients understand the
information given and adjust to what the information means for them (Lehtinen, 2005).
This understanding was achieved jointly by the patient and the clinician, and
interactionally, by the patients producing candidate understandings at selective positions
within the typical monologue of information giving by the clinicians. A candidate
understanding was described as the patients stating what they had actually heard rather
than just acknowledging that they heard the information. Instead of producing an
acknowledgement token such as ‗uh huh‘, the patients show what they have understood
what was said. This usually took the form of a particle (i.e. so, in other words, so you
mean) + a paraphrase (a summary of the information).
Clinicians not only ensure that patients understand the information, but they have to
manage their information giving when the patients come with information that may be
discrepant from what the clinician provides (Lehtinen & Kääriäinen, 2005; Lehtinen,
2007). The clinicians kept a delicate balance between acknowledging the patients‘
knowledge and maintaining their own expertise. They may manage the situation by
accepting the information, and show that it is not discrepant with their information, or they
reject the information indicating that it is ‗wrong‘. This is achieved by organizing all the
knowledge into a coherent whole, offering evidence for their original information, and
attributing causes to the patient‘s information.
64 Chapter 3 Interactional Research
Some insights were also gained as to how genetic counsellors provide information. One
study examined the discussion of the procedural pain of an amniocentesis (Gordon et al.,
2002). The authors identified three patterns of constructed dialogue in terms of form and
content: the use of non-medical terms (colloquial); the use of similes; and downplaying the
pain. In terms of function, the dialogue served to preserve the patient‘s positive face, to
help with providing evidence and to maintain value-neutrality.
Information giving as an activity of providing large amounts of medical and genetic
information to the extent it is seen in medical and genetic counselling encounters was not
really found in counselling and therapeutic sessions. However, in HIV counselling where
one of the activities included providing patients with information on the virus, testing and
high risk behaviour, information giving sequences were reported (Silverman, 1997).
Information giving was often found to be a monologue produced by the counsellors with
the patients responding with acknowledgment tokens. This was termed an information
delivery format. Although this format is typical, two types of deviations were found which
included questions initiated by the clients and clients making a conversational contribution
(Silverman, 1997).
3.4.3 Risk discussion, decision-making and non-directiveness
Risk discussion, decision-making and non-directiveness are distinct entities, but in an
interaction, as shown in the previous chapter, it becomes difficult to separate the one from
the other. These categories become artificial as they influence each other, and as a result
the three concepts are discussed together here.
65 Chapter 3 Interactional Research
In examining risk communication in genetic counselling, not only the technical and clinical
aspects of risk, but also the anxieties and interpersonal concerns raised by knowing the risk
and being at risk, have been considered (Sarangi et al., 2003; Sarangi, 2002). A distinction
is made between the risk of occurrence (the disorder will manifest) and the risk of knowing
(undergoing tests that will clarify the risk of disease occurrence) (Sarangi et al., 2003). In
predictive genetic counselling sessions (for Huntington disease and cancer), it was found
that these risks become conflated and the one was understood in light of the other. It was
further found that genetic professionals make use of six discourse strategies in the framing
of risks: abstraction (statistical facts and figures such as 1 in 12); reformulation (presenting
risk in a more context specific way and included the use of metaphors and visual aids);
externalisation (general patterns, not the individuals‘ situation); localization (relevance and
applicability to the patient situation); temporalisation (time axis in which risk becomes
more or less relevant); and agentivisation (engagement with risk by screening and
surveillance). Counsellors have been found to mitigate their probability statements and
manage inexactness, range and degrees of confirmation, by contextualizing the information
(Sarangi, 2002)
A number of studies have focused on non-directiveness. Research has highlighted the
difficulties in understanding, maintaining and measuring non-directiveness (Benkendorf et
al., 2001; Hallowell, 1999; Michie et al., 1997; Pilnick, 2002; Pilnick & Zayts, 2011;
Sarangi & Clarke, 2002), particularly in clinical practice where an approach varies in
different circumstances (Michie et al., 1997; Sarangi et al., 2004; Schwennesen & Koch,
2012; Weil et al., 2006; Williams, Alderson, & Farsides, 2002; Zayts & Schnurr, 2011).
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In some research projects the behaviour of the counsellor has been studied and the
language of the counsellor analysed for its features (Benkendorf et al., 2001), for its
potential to initiate ‗reflective frames‘ (Sarangi et al., 2004), or for the ways screening
options are presented (Pilnick, 2004; Pilnick, 2008; Schwennesen & Koch, 2012).
Reflective frames have been found to be initiated by using reflective questioning or
nonspecific invites, by addressing awareness and anxiety, by discussing decisions about
testing and the impact of results (Sarangi et al., 2004). Patients‘ responses to reflective
frames show some misalignments for both questions about the decision to have testing and
about the impact of the test result (Sarangi et al., 2005).
Sarangi and Clarke (2002) showed that in childhood testing, the parent‘s rights to test and
child‘s rights to autonomy may become juxtaposed. Both professionals and parents use
contrast to negotiate the outcome; the parents use contrast to justify their position, while
the professional uses contrast to offer a preferred option without explicitly contradicting
the parents. These strategies have developed partly due to the professional‘s commitment
to maintaining a non-directive stance.
3.4.4 Counselling
To what extent ‗counselling‘ occurs and to what extent genetic counsellors practice what
Kessler identified as the ‗Counselling model‘ in genetic counselling sessions has been
debated, and as a result some researchers have attempted to examine this aspect (Butow &
Lobb, 2004; Ellington et al., 2005; Ellington et al., 2006). Using coding systems such as
RIAS, it was found that genetic professionals in cancer genetic counselling sessions spent
little time on eliciting emotional responses from patients, seldom involved patients in the
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sessions, and the sessions were largely educational in nature. However, both counsellors
and patients devoted large amounts of time to providing biomedical information. Distinct
patterns were evident in sessions: a client-focused psychosocial style; a counsellor-driven
psychosocial pattern; biomedical question and answer pattern; and a client-focused
biomedical pattern (Ellington et al., 2006). Teaching patterns were also characterized by
higher verbal dominance by the counsellors compared to counselling patterns where
counsellor verbal dominance was low (Roter et al., 2006b). The sessions have not been an
‗either-or‘, but rather a combination of teaching and counselling approaches and
counsellors had their own styles. Further, the presence of a companion in the session had
an effect on the extent to which counselling occurred (Ellington et al., 2006).
Whether or not counselling actually occurs in genetic counselling interactions is one
question, but what the characteristics are, and how emotional aspects are dealt with in the
sessions are other perspectives to consider. These aspects do not seem to have been
investigated in genetic counselling from a socio-linguistic perspective. In an identify and
count study on breast cancer genetic counselling, it was found that the extent to which
women provided emotional cues were influenced by patient characteristics, counsellor
characteristics and an interaction between the two (Duric et al., 2003). The researchers
found that patients gave at least one emotional cue during the session, but not all the
professionals respond to these cues and a particular professional did not necessarily
respond to all the patient cues. The more intense emotional cues were more likely to be
addressed and, when professionals responded to emotional cues, patients gave more during
the sessions. They also found that patients who received responses to their emotional cues
experienced less depression after the sessions. Genetic professionals do influence the
extent to which patients share their emotions. A balance can be achieved if patients are
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given interactional space to verbalise what they think and to share their fears and needs
(Brookes-Howell, 2006). The responsibility seems to be on the counsellors to attend to the
emotional aspects as they direct the interactions. The fact that ‗counselling‘ has been found
to occur less often in genetic counselling sessions, may echo the difficulty of providing
both education and counselling, as well as the lack of a clearly defined practice model
which would clearly define the counsellor‘s role.
A better description of counselling, interactionally, can be found in the counselling
literature. In HIV counselling during delicate object discussions, certain patterns were
identified (Silverman, 1997). Counsellors encouraged patient narrative by showing
empathy, and in the interaction this was characterized by paraphrasing and repeating what
the patients had said. Further analysis showed that patients only experience empathy when
they interpreted the counsellor‘s repeating of their response as an ‗I hear what you say‘
rather than ‗warrant (justify why) what you say‘. Further understanding of what
counselling talk looks like comes from examining troubles talk (Miller & Silverman,
1995). Trouble talk in counselling refers to patients talking about their life experiences
which range from serious problems to mild issues. A specific question design is
characteristic of such talk and includes: asking about dreaded issues; future orientated
hypothetical questions such as ‗how would others feel about….?‘; and scaling questions
such as ‗how would you rank….?‘. In psychotherapeutic discourses the therapist makes
links between client experiences (Peräkylä, 2004), such as childhood, everyday life and the
therapist-client relationship. An examination of the genetic counselling sessions‘
‗counselling phase‘ could compare to what extent there is overlap between the two
disciplines, as well as what techniques have been developed in practice.
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3.5 Asymmetry
A uniform observation of the communication in medical encounters is the interactional
asymmetry which is characterized by doctors‘ actions being first (requesting) and patient
responses being second (answering) (Robinson, 1998). Explanations for asymmetry can be
found in the theory which claims that communication is socially organized. This implies
that doctors are powerful and dominant and patients are disempowered and subordinate.
As a result the interaction is a predestined product resulting in patient submission to
doctor‘s power (Robinson, 1998).
Several studies found that the medical encounter permits the doctor control over the
development of the interview (Heath, 1981, 1986; Marvel et al., 1999; Mishler, 1984;
Roberts, 2000; Robinson, 2006; Waitzkin, 1991). The doctor‘s control is evident in that the
doctor can redirect or focus the consultation before the patient gets to voice all his/her
concerns (Marvel et al., 1999). The doctor achieves control by being the first and last
speaker and thus being the one who decides what direction to take by steering the
questioning and assessing the answers (Mishler, 1984). This allows the doctor to use
his/her position as the speaker to control the interview by opening each cycle with his/her
request or question. Doctors can selectively give attention to some topics and be
inattentive to others. Through questioning, they can create a domain of relevance (to
themselves and the patients) which Paolo Freire calls ‗naming the world‘ (cited by
(Mishler 1984), where the focus of the asymmetry or power is on biomedical aspects. The
pattern suggests a particular voice which Mishler calls ‗the voice of medicine‘ (Mishler
1984). The voice of the patient, ‗the voice of the life world‘, is in the topics which patients
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introduce into the interview because of their relevance. This voice of the life world is
often not voiced in the medical encounter or if voiced, it is often ignored.
An alternative explanation is that the asymmetry is interactionally grounded (Robinson,
1998). This implies that the patient and doctor accept turn taking rules that are different
from ordinary conversation. Both the doctor and the patient participate in organizing the
turn taking. However, both hold the doctor accountable and the doctor is treated as being
responsible for the next activity including soliciting an appropriately fitted concern
(Robinson, 2006). Similarly, the patient‘s display of recipiency (showing the doctor that
s/he is ready to voice a concern) is evidence that both parties hold the doctor accountable
(Heath, 1986). Asymmetry is therefore co-constructed by both patients and doctors and is
inevitable in the encounters (Pilnick & Dingwall, 2011). Not only is there asymmetry of
topic as it is the patient that is sick and not the doctor but there is also asymmetry of task
since the doctor has to diagnose and manage and as a result needs to ask questions and
examine. The authors suggests that ―…asymmetry lies at the heart of the medical
enterprise: it is founded in what doctors are there for‖ (Pilnick & Dingwall, 2011, p. 1374).
Similar asymmetry has been found in genetic counselling interactions as the entire
consultation has been found to have a tightly controlled agenda and neither the counsellor
nor the patient wants to or is able to disturb it (Armstrong et al., 1998). As found in
medical encounters, the voice of the patient is not always heard and the counsellors have
control of the session (Babul-Hirji et al., 2010; Hodgson et al., 2009). Different voices
were described during different stages of the consult in which the genetic professionals
oscillate between: the voice of educator; efficiency and control; compassion and empathy;
while the patients oscillate between: the voice of story-teller; social communicator;
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complier; and apologizer (Babul-Hirji et al., 2010). Such different patterns were also
described by Roter et al. (2006b) and included clinical teaching, psycho-educational
teaching, supportive counselling and psychosocial counselling.
3.6 Nonverbal communication
As with verbal communication researchers have employed different methodologies to
examine non-verbal behaviour. Nonverbal behaviour was measured by observing video
recordings of nurse patient interactions (Caris-Verhallen, Kerkstra, & Bensing, 1999). The
process involved clearly defining nonverbal behaviours and noting the duration and
frequencies of these. Others also ‗counted‘ the number of occurrences of non-verbal
behaviours based on previously identified behaviours (Duggan & Parrott, 2001). For these
purposes, instruments to measure nonverbal behaviours exist, i.e. the relational
communication scales for observational measurement (RCS-O) (Gallagher, Hartung,
Gerzina, Gregory, & Merolla, 2005) and nonverbal communication in doctor–elderly
patient transactions (NDEPT) (Gorawara-Bhat, Cook, & Sachs, 2007). As with verbal
communication, such methodology provides a good basis for unravelling non-verbal
behaviour but it does not allow the details and associations between verbal and non-verbal
features to emerge.
Examining non-verbal communication from a sociolinguistic perspective showed that, in
particular, gaze and posture played a role in medical interactions (Heath, 1986, 2002;
Robinson, 1998). During the opening sequence of a consultation, non-verbal
communication encourages activities and signals when to move from one phase to another.
During the preliminaries, the doctor and the patient prepare for ‗the business at hand‘ by
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assuming appropriate spatial and physical alignment (Heath, 1986; Robinson, 1998).
Looking at or looking away from one another affects the interaction as the doctor can
determine when the patient is ready to begin and withholds the start of business until the
patient has sat down and assumed a ‗face to face‘ orientation. The patient is often
uncertain when the doctor is ready to begin, for example when s/he is still reading medical
records, and sits waiting for the doctor to initiate talk.
The patients may display both availability and recipiency which allows the doctor the
opportunity to begin the consultation. Showing such availability for the consultation to
begin is what Heath (1986) calls a display of recipiency. Robinson (1998) also found that
patients show their availability by directing towards the doctor their posture and gaze
which is called a frame of dominant orientation by Robinson (2006). In his analysis, Heath
(1986) found that the display of recipiency was associated closely with the doctor‘s speech.
This display shows availability and an interest in receiving a response and gives the doctor
the opportunity to respond with an action. By encouraging the doctor to begin the patient
receives the floor to disclose why s/he is there. The close connection between the doctors‘
spoken words and the patients‘ display of recipiency, suggest that the first might elicit the
other and as a result the patient gently pushes the doctor to the ‗business at hand‘.
Heath (1986) also found that a display of recipiency plays a role when the patient is
responding to a request from the doctor. Patients were found to pause during speech in
their turn until the doctor looked up at the patient from his notes (display of recipiency).
This was found to take place as a pivotal three-action sequence. A pause is produced to
encourage gaze realignment, then such realignment is followed by a new or continuation of
speech. By encouraging the listener to realign gaze, the speaker shows that being looked at
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is important, as it shows that the listener is attending to and receiving the speaker‘s
activity. Therefore, it can be suggested that when the doctor reads the medical records, the
patient perceives this as his/her attention being with the medical records and not with what
the patient is saying. Robinson (1998) on the other hand, explains that when doctors read
the medical records they engage with the ‗patient in bureaucracy‘ and not the ‗patient
embodied‘ but that both imply being engaged with the patient. Engagement is when gaze
and body orientation are focused on the patient or on medical records. He argued that the
move from engaging with patient embodied during the greeting to the patient in
bureaucracy is necessary in order to discuss the patient‘s reason for the visit.
Robinson‘s (1998) work showed that patients and doctors use gaze and body orientation to
communicate engagement and disengagement with different activities and therefore with
each other. They use different segments of the body (head, torso and lower body) to
engage simultaneously with different activities and they use their lower body to indicate a
dominant and longer term engagement (frame of dominant orientation). Non-verbal
behaviours such as head nodding, smiling and gaze, were found to be related to effective
communication and that task orientated communication was associated with instrumental
touch and negatively related to head nodding, smiling and gaze (Caris-Verhallen et al.,
1999). Physicians‘ use of facial reinforcers (nodding and animated facial expressions)
during introductions was positively related to the patient sharing more about themselves
and the difficulties of their illness (Duggan & Parrott, 2001).
Non-verbal communication is thought to be linked to a patient-centered medical interaction
as it was shown that displaying attention to the patient by directing gaze and posture to the
patient during critical moments of patient narratives meant that patients felt heard
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(Ruusuvuori, 2001). As a result non verbal behaviour was also shown to result in higher
patient satisfaction (Mast, 2007). However, the link between non-verbal behaviour and
patient satisfaction is more complex than just gaze and posture as both physician and
patient characteristics seemed to play a role.
3.7 Multicultural genetic counselling interactions
A major limitation in research on process studies is the deficit of studies in non-Western
and multicultural and multilingual settings. There have been very few studies on the
process in non-Western cultural settings. A study on women of Mexican-origin living in
the USA revealed more miscommunications in the sessions (Browner et al., 2003) and it
was found that women and the doctors in a prenatal setting had conflicting goals regarding
the women‘s pregnancies (Hunt et al., 2005). Ellington et al. (2007) provide a description
of pre- and post test breast cancer session of an African American family. Research in
Hong Kong found that socio-cultural circumstances affected the genetic counselling
process (Pilnick & Zayts, 2011; Zayts & Schnurr, 2011). In South Africa, information is
available on the interactional dynamics of a single prenatal genetic counselling session
(Tovell, 2004). Multicultural genetic counselling interactions are considered in more detail
under intercultural communication in Chapter 4.
3.8 Summary
This chapter summarized findings from interactional research in genetic counselling and
selective findings from the medical and counselling literature, in particular HIV
75 Chapter 3 Interactional Research
counselling. This review has allowed a glance into ―The Black Box of Genetic
counselling‖ (Biesecker & Peters, 2001, p. 195).
Some studies described the overall interaction in counselling sessions, whilst others
examined one aspect in the finest detail. Different settings were investigated and the
process was studied while being conducted by differently trained professionals. Certain
aspects, particularly non-directiveness, have been over investigated, while other aspects
such as negotiation of agendas and management of psychosocial talk have been under
investigated, and most of the research has been conducted in Westernised settings.
76 Chapter 4 Intercultural Communication
4 Chapter 4 Intercultural Communication
Intercultural communication is defined here as the communication between individuals
from diverse cultures and languages. As the genetic counselling interactions in the study
take place in such a setting, these concepts needed to be considered.
This chapter explores culture mainly from a medical sociological and educational
perspective with an emphasis on literature concerning cultural aspects in genetic
counselling. As will be seen, this provides a background perspective, but examining
intercultural interactions is a difficult task and requires careful consideration.
4.1 Defining culture
The concept of culture is complex and multidimensional; it is not a concrete entity but
rather ‗loosely shared mental categories‘ (Clarke, 1997). Wang (2001, p. 208) defined
culture as follows:
―Broadly speaking, cultural systems connect people and groups who identify or associate
with one another through common purposes, needs, or perceived similarities. Based upon
explicit (e.g. tangible features such as clothing, food, festivals, and behaviours) and/or
implicit information (e.g., intangible aspects such as conscious and unconscious values,
assumptions, attitudes, beliefs and feelings) group identities (e.g., racial (phenotypic),
socioeconomic status, religious reference groups, etc.) endured over time and space while
varying in number, intensity, and resilience of belongingness, self-investment, and degree
of group acceptance‖
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To expand further on this description of culture, common assumptions and agreements
among sociologists are as follows (Gilbert, Selikow, & Walker, 2002):
Culture is not individual but takes place in a social context
The groups to which the term ‗culture‘ applies vary greatly. There is, for example,
‗Asian culture‘, as well as ‗deaf culture‘ for people who have hearing impairments
There is diversity amongst the individuals of one particular culture
Culture defines what is acceptable in a particular community
It distinguishes humans from animals and is linked to symbols and language
It shapes behaviour and is closely linked to shared traditions, customs and beliefs
It is a collection of non-physical traits, such as values, beliefs, attitudes, behaviours,
customs, social and political institutions, arts, crafts, and science
It varies from community to community and is a process that is not fixed but
continuously changes
We are not born with, but learn culture through a process of socialization or
transmission from generation to generation
Culture is viewed, by those who practice it, as normal or taken for granted, but may
be seen as bizarre or strange by those from different cultures.
Culture is a relative concept, and must be studied in terms of its own values and
meanings
There are many different cultures in the world, each having its unique values, customs and
beliefs but at the same time sharing some values with other cultures. People have different
ways of viewing culture and five typologies have been distinguished: Universal,
Ubiquitous, Traditional, Race-based, and Pan-National (Lewis, 2002; Wang, 2001).
Cultures can also be grouped together and described in terms of a worldview or paradigm.
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The Western worldview underpins the dominant biomedical approach in Western medicine
which values individual autonomy and self-determination and believes that disease is
caused by specific agents (Lewis, 2002). This worldview is only one way of representing
and treating biological reality but because it is such a predominant paradigm, other ways of
viewing the world are sometimes overlooked and this can be referred to as an Eurocentric
approach. Other world views for example the traditional African worldview embraces a
holistic and anthropocentric ontology where man forms an inseparable whole with the
cosmos, and everything (including God, spirits, and nature) is seen in its relation to man
(Van Dyk, 2001). Physical characteristics, behaviours and defects may be viewed in terms
of religious, ethical or moral transgressions (Finkler, Skrzynia, & Evans, 2003; Finkler,
2005).
4.2 Culture in genetic counselling
As discussed in chapter two, genetic counselling practices are based in Western cultural
and health philosophies and adhere to the principles associated with the biomedical model
of disease causation (Lewis, 2002). Cultural worldviews that do not value the principle of
autonomy and the importance of understanding the cause of disease are seen as different.
The very ‗idea‘ of genetics is rooted in Western medicine (Finkler, 2005). This cultural
encapsulation (Lewis, 2002), or ethnocentrism, when discussed in relation to cultural
psychology (Burman, 2007), results in other cultural worldviews being compared to
western worldviews and viewed as having a disadvantage that needs to be overcome. The
following quote from a reflection on a case study on ‗an uneducated Spanish couple‘
illustrates this: ‖The broader lesson of this case study is that uneducated people of lower
socioeconomic background most certainly can learn and benefit from genetic counseling
79 Chapter 4 Intercultural Communication
provided the level of discourse is tailored for their needs‖ (Applebaum & Firestein, 1983,
p. 155).
The call to address cultural aspects in genetic counselling was made in the early 1990`s
when Wang and Marsch (1992, p. 91) described how the ethno-cultural values held by
Asians may work against the norms generally employed by geneticists and genetic
counsellors in the USA. They said ―….it is essential, therefore, that professionals offering
genetic services acknowledge the impact of ethnicity and culture on the ethical principles
generally utilized in such services if ethically and culturally appropriate services are to be
delivered.‖
Greb (1998) and Weil (2000) summarized the myriad of ways in which other cultural
beliefs may affect genetic counselling. The list below is a combination of the writings of
the two authors.
The relationship toward nature - How do individuals think about natural forces and
events?
Time orientation - What is important, planning for the future (future and goal
orientated) or living in the present (past orientated), using every minute to do
something or less concern for the passage of time?
Family relationships - Who is regarded as family? What roles do they play? Who is
regarded as ‗sister‘?
Gender roles - What is the role of a man and a woman? Is the family matrilineal or
patrilineal?
Marriage - Does ‗family well-being‘ take preference over individual needs? For
example, are marriages arranged and/or consanguineous?
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Role of children - What is expected from boys and girls? What are the expected
roles of the parent and the child?
Bereavement - How do people deal with bereavement, birth, death etc?
Rituals surrounding birth and death - Are there rituals? If so what are they?
Religion and superstitions - What does their religion permit or not permit them to
do and what rituals do they need to do?
Health and illness - What are their explanations of body, mind and spirit?
Concept of self - What is the patient‘s view? Is it individualistic (autonomy and
achievement) or collectivist (honour or duty), or a combination of both?
Non-verbal behaviour - Cultural practices may differ with regard to eye contact,
facial expression, touch, proximity, giving and receiving information and gestures.
Language - Ability to communicate in a common language promotes a sense of
cultural identity and greatly facilitates the exchange of information, ideas and
values. The absence of a common language creates a major barrier to
communication.
Socio-economic status - Differences in education, financial resources and security,
occupational status, medical aid, and disability benefits affect worldviews.
The points highlighted by the authors are valid and may indeed affect the counselling
session. However, care should be taken when ascribing difficulties in multicultural
sessions due to the differences in cultures. As will be shown in the following sections,
culture and multicultural interactions are complex and require more than such simplistic
assessments.
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4.3 Research regarding culture in genetic counselling
Research on culture in genetic counselling has focused on how other cultures differ from
Western culture. This approach not only emphasises a focus on attributing a ―cultural
meaning‖ to aspects but also foster a Eurocentric approach. A large number of studies
have been performed on how a selected cultural group in a specific area viewed a
particular issue. There are studies on patients belonging to specific cultural groups, such as
couples in the United Arab Emirates (UAE) (Al-Gazali, 2005), Bedouin and Jewish
communities in Israel (Raz & Atar, 2003), orthodox Jews in America (Mittman, Bowie, &
Maman, 2007), Somali immigrants to the USA (Greeson, Veach, & LeRoy, 2001),
African American, Hispanic groups, and Whites in the USA (Browner & Preloran, 1999;
Cohen, Fine, & Pergament, 1998; Gammon et al., 2011; Long, Thomas, Grubs, Gettig, &
Krishnamurti, 2011; Saucier et al., 2005; Singer, Antonucci, & Hoewyk, 2004), Asian-
Pacific and Latin American immigrants in San Francisco Bay (Mittman et al., 1998),
African-Americans, Latinos, Israeli Muslims (Neter et al 2005), Palestinians and
Palestinian Americans (Awwad et al 2008), Chinese Australians (Barlow-Stewart et al.,
2006) and women with mental retardation (Finucane, 1998). Culturally diverse groups
(Catz et al., 2005) have also been studied.
These studies aimed to assess the selected group‘s attitudes, values and beliefs, with the
focus on examining principles important to the Westernized view of genetic counselling.
In one study, only half of the couples in the United Arab Emirates acknowledged a genetic
basis for their child‘s condition and only 10% remembered the risk given (Al-Gazali,
2005). Differences were observed when African-Americans, Latinos and non-Hispanic
Whites were compared, and African-Americans were less knowledgeable and less
concerned about genetic risks compared to the White samples (Akinleye et al., 2011).
82 Chapter 4 Intercultural Communication
Similarly Catz et al. (2005) found that knowledge about genetics and genetic testing is
lower in Hispanic than in other patients. Differences in the utilization of genetic testing
between African-Americans, Latinos and non-Hispanic Whites were found to be due to
different preferences, values and beliefs, differential access (Singer et al., 2004) and the
role Latinos‘ male partners played in the amniocentesis uptake rate (Browner & Preloran,
1999). Lower uptake of amniocentesis has been found amongst Hispanic patients
compared to Caucasian, and African patients (Saucier et al., 2005) and some of the
differences could be ascribed to lower socio-economic status and education level (Al-
Gazali, 2005; Saucier et al., 2005). Whether acculturation can explain some of the
differences in beliefs between members of the same culture further shows an ethnocentric
approach in research on genetic counselling and culture (Awwad, Veach, Bartels, &
LeRoy, 2007; Barragan, Ormond, Strecker, & Weil, 2011; Finucane, 1998). A study on
Mexican women‘s health practices (accessing general practitioners) in USA showed that
women could be separated into those who were more acculturated to Western American
culture and those who were true to their Mexican culture (Barragan et al., 2011). Women
who were more acculturated placed less value on their Mexican beliefs and traditions while
the less acculturated women valued and practiced their beliefs more.
An ethnocentric approach is also evident in research regarding the impact of culture on
genetic counselling. The challenges of developing education programmes on cancer
genetics for African American women (Kendall et al., 2007) and Chinese American
women (Sim, Zhou, Hom, Chen, & Sze, 2011) stem from the goal of educating these
patients about concepts important according to the Western principles followed in genetic
counselling. Similarly, the experiences and challenges of providing culturally appropriate
genetic services are associated with this Eurocentric approach (Middleton, Robson,
83 Chapter 4 Intercultural Communication
Burnell, & Ahmed, 2007; Saleh, Barlow-Stewart, Meiser, Kirk, & Tucker, 2011), as is the
assessment of the genetic counsellor supervisors perceptions of multicultural competence
and the effect of these perspectives on their ability to evaluate genetic counselling students
(Kyung Lee, McCarthy Veach, & LeRoy, 2009).
The reality is, however, that patients from different cultural groups do access Western
genetic counselling services (Singer et al., 2004; Weil, 2001). In other medical practices, it
was found that women valued and made use of Western medicine and that many accessed
both traditional and Western services (Barragan et al., 2011). The challenges encountered
when working with a diversity of patients forced genetic counselling professionals to
undertake research so that the issues in intercultural encounters could be better understood.
The studies undertaken have provided insights into: perceptions of disability (Greeson et
al., 2001); causes of birth defects or genetic disorders (Cohen et al., 1998); perceptions of
prenatal genetic counselling (Awwad et al., 2007); attitudes towards termination of
pregnancy (Neter, Wolowelsky, & Borochowitz, 2005); perceptions of reproductive
technology (Mittman et al., 2007); and the influence of religious and spiritual beliefs on
amniocentesis decision-making (Seth et al., 2011).
While patients from other cultures appear to value genetic counselling services, there may
be aspects preventing them from utilizing services (Butler et al., 2010; Catz et al., 2005;
Singer et al., 2004). Western culture remains the dominant culture in many respects and
therefore it holds economic, political and scientific power and has knowledge which puts
patients from different cultures at a disadvantage (McInnes, 2011). ―You know as well as
we know that what is just is arrived at in human arguments only when the necessity on
both sides is equal, and that the power-full exact what they can, while the weak yield what
84 Chapter 4 Intercultural Communication
they must.‖ (Thucydides, Book V, as quoted by (Singh, Lele, & Martohardjono, 1988). In
order to provide adequate genetic services, it is believed professionals need to do more
than understand that there are cultural differences and aim to address how the sessions are
approached from a cultural perspective.
4.4 Culture and South Africa
Many patients in the South African health care setting value collective thinking rather than
individual thinking and have an external locus of control with a belief in fatalism
(Hammond-Tooke, 1989; Kromberg & Jenkins, 1997; Penn & Watermeyer, 2012). The
idea of Ubuntu ‗a person is a person because of another person‘ is advocated in health care
(Berg, 2003). This collective approach can be seen in practice when patients consult with
family members regarding decisions to be made (Penn & Watermeyer, 2012).
There is evidence in the literature that some South African patients attribute disease to
mystical causes, to not performing cultural rituals or by being involved in taboo practices,
as such practices can anger the ancestors (Hammond-Tooke, 1989; Kromberg & Jenkins,
1997; Kromberg & Jenkins, 2012). Levy (1990, p. 187) from his post genetic counselling
interviews found evidence for this when a patient stated: ―I made a terrible fault by looking
at ‗police file‘ on TV and saw a lot of horrific things, this is what caused me to have such a
baby.‖ and ―I still have to slaughter something and ask my forefathers if I can go for
sterilization‖
In some cases the cause of genetic disorders, as reported by a group of grandmothers was
thought to be due to several factors. These included; lifestyle, such as wearing tight clothes
during pregnancy; behaviour such as laughing at others; social problems such as domestic
85 Chapter 4 Intercultural Communication
abuse; not following cultural rituals; religious reasons such as punishment from God;
something ‗being wrong inside‘; and/or the mother‘s age and the mixing of blood (Penn,
Watermeyer, MacDonald, & Moabelo, 2009). Many caregivers of children with
haemophilia were not sure or did not understand the cause of the condition (Solomon,
Greenberg, Futter, Vivian, & Penn, 2012). They had different views of what they thought
caused haemophilia and some said that not performing cultural rituals was the cause. These
caregivers understood inheritance in terms of physical, behavioural and moral
characteristics being passed down through generations and that the stronger characteristics
in the parents would be passed to the child. In contrast they also thought that ‗all things
come from the mother‘s blood‘ and that the baby ‗eats from her‘ (Solomon et al., 2012).
Other causes mentioned were related to hormones being secreted from the father during
intercourse, something the mother ate, or an injection given during pregnancy (Solomon et
al., 2012)
Research has also provided some insight into other practices and beliefs which have an
impact on genetic counselling. There are cultural practice and taboos regarding termination
of pregnancy, infanticide, selection of partners, polygamy and polyandry (Kromberg &
Jenkins, 1997). There are, for example, several beliefs about birth, miscarriage, and infant
deaths, when a fetus is regarded as being alive and what is regarded as appropriate disposal
of a fetus or stillborn infant (Jewkes & Wood, 1998). Such disposal depends on the status
the fetus is awarded, and the stronger the ties with the community the more of a person
they will be considered to be and the more a proper burial will be required. The birth of a
child is very important for the clan, for the woman‘s status as an adult, and as a contact
between the two families, since children are seen as helpers and they have the
responsibility of taking care of their parents in their old age (Berg, 2003). It is very
86 Chapter 4 Intercultural Communication
important for the father of the baby to acknowledge paternity, but this does not necessarily
mean marriage. Berg (2003) described the case of a mother who attempted to kill her baby
due to the father not acknowledging paternity, and the professionals‘ lack of understanding
of the issues involved. Strong indigenous cultural beliefs and knowledge regarding AIDS
were found to still exist in rural Kwazulu Natal (Liddell, Barrett, & Bydawell, 2006), while
infanticide was said by a group of grandmothers not to be widely practiced anymore,
because the younger generation delivered their babies in hospital (Penn et al., 2009)
As diseases are thought by some individual to be caused by supernatural phenomena,
different types of traditional healers are believed to be able to treat such ailments (Kale,
1995). Inyangas (herbalists) treat with herbs, while Isangomas (Diviners) can access and
plead with the ancestors and Umthandazi (faith healers) treat by prayer and holy water
(Kale, 1995). In 1995, it was found that 80% of the South African population consulted
traditional healers (Kale, 1995). In Kwazulu Natal, one study showed that 70% consulted
traditional healers as their first choice with sangomas being consulted the most (Puckree,
Mkhize, Mgobhozi, & Lin, 2002) and another that 84% of HIV positive men had consulted
with a traditional healer (mostly herbalists) in 2007 (Babb et al., 2007). Most South
African patients however make dual use of both Western and traditional medicine (Berg,
2003; Kromberg & Jenkins, 1997; Penn et al., 2009; Solomon et al., 2012). The reasons
are not fully understood and one study found that women valued Western care for delivery
but not for pregnancy management (Myer & Harrison, 2003).
As South African has 11 official languages, language differences play a major role in the
provision of genetic counselling services. For example, difficulties in language and
terminology between Western English speaking doctors and Xhosa speaking patients led to
87 Chapter 4 Intercultural Communication
misunderstanding and compromised care in one paediatric setting (Levin, 2006).
Communication difficulties due to language issues were reported by patients, nursing and
medical staff and the professionals often felt helpless in their efforts to assist the patients
(Deumert, 2010). Language differences can partially be overcome by the use of
interpreters. However, making use of interpreters results in a host of other problems and it
is extremely rare to have officially trained translators employed at health facilities. As a
result, translating occurs ad hoc and falls onto untrained personnel, mostly nursing and
other staff (Penn & Watermeyer, 2012; Penn, 2007), but also fellow patients, cleaners or
car guards assist with translation as we have experienced in our clinics. A further difficulty
is that the words used in genetic counselling are unfamiliar for the translator as there are no
words for DNA, genes, chromosomes, genome, genetic predisposition or Down syndrome
in the local African languages (Kromberg & Jenkins, 1997; Penn et al., 2009; Solomon et
al., 2012). There are also no words for genetic disorders in general and genetic disorders
were described as such as ‗God‘s creature‘ or ‗family child‘ or ‗disabled child‘ or ‗cripple‘,
by a local group of grandmothers (Penn et al., 2009).
How this array of factors influence the genetic counselling interaction in South Africa is
not well understood and most of what is known is from an analysis of one prenatal genetic
counselling session with a woman who had a previous abnormal baby (anencephaly) (Penn
& Watermeyer, 2012; Tovell, 2004). Cultural issues were not found to be explicitly
discussed during this single session, but they seemed to frame some of the discussions
especially during history taking. Although there seemed to have been an understanding of
cultural factors, the counsellor did not address or explore these further in the session.
Discussions about termination of pregnancy and a blood test, though sensitive, also did not
explore the cultural connotations these might have not did the woman introduce any
88 Chapter 4 Intercultural Communication
cultural connotation. Defining an issue as ‗cultural‘ and therefore worthy of exploration is
difficult because of the complex nature of culture. Further, the researcher believes this
approach does not contribute to multicultural counselling as it categorizes people due to
their differences.
4.5 Culturally appropriate genetic counselling
With the available information the challenge is to find ways in which professionals can be
more culturally competent in providing genetic counselling to patients from diverse
cultures. Wang and Marsh (1992) in the 90‘s called for professionals to acknowledge the
impact of ethnicity and culture in genetic counselling. They found shortcomings in
sessions with patients of Asian culture in terms of autonomy, informed consent and non-
directiveness.
The training of professionals in cultural competence has received much attention and it
was said that training should not only include knowledge of relevant ethno-cultural groups,
but also encourage self-awareness and understanding of the professionals own ethno-
cultural views, and an understanding of institutional and social barriers (Weil 2001). The
need for professionals to become culturally competent led to the development of ―The
Handbook of Cross-Cultural Genetic Counseling‖ (Wang 1994), as well as the outlining of
a number of skills and techniques which would help develop multicultural competence
(Oosterwal, 2009; Wang, 2001; Weil & Mittman, 1993; Weil, 2001). A website
(http://www.geneticcounselingtoolkit.co) dedicated to multicultural genetic counselling
was also developed. The underlying assumption of the Handbook of Cross-Cultural
Genetic Counseling was that counsellors understood themselves and could use this
knowledge as an essential counselling tool. In order to become multiculturally competent
89 Chapter 4 Intercultural Communication
self-awareness and an understanding of one‘s own cultural code, together with an attitude
of humility and appreciation of the diversity of patients and the ability to use the patient‘s
cultural codes as a resource, was thought to be crucial. An understanding of racial-cultural
group dynamics, various cultures and counselling skills, how to establish and maintain
trust, how to pay attention to a patient‘s mistrust and their decision-making process, how to
use the non-directive approach and when, and the use of translators, were also found to be
important (Oosterwal, 2009; Wang, 2001; Weil & Mittman, 1993; Weil, 2001).
Wang (1998) evaluated a multicultural education curriculum for effectiveness in increasing
cultural competence using the Multicultural Awareness-Knowledge-and-Skills Survey. He
found the handbook of cross-cultural genetic counselling to be effective in enhancing
measured multicultural competence. An important finding, was that the complexities of
practicing multiculturally were not always addressed and the students in the study reported
that ―their clients did not reflect the information the student had read in the literature‖
(Wang, 1998, p. 105). As a result, the students were frustrated when trying to apply what
they had learned. Students viewed the aspects regarding knowledge and awareness in the
Handbook as very interesting intellectually, but not necessarily practical or relevant to
genetic counselling. A contributing factor to the difficulties of putting theoretical principles
into practice may be the lack of clarity in the definitions of ‗ethno-cultural groups‘ which
are often defined only in terms of country, heritage and geographical location and then
cultural counselling is addressed only from this perspective (Wang, 2001; Weil, 2001). A
culturally encapsulated perspective may also be one of the possible contributors as may, a
lack of understanding of all the issues involved in multicultural genetic counselling
practices (Browner et al., 2003).
90 Chapter 4 Intercultural Communication
A change in perspective with regard to cultural issues from cross-cultural to multicultural
practices, highlighted some of the issues regarding practical implementation (Wang, 2001).
In cross-cultural practice, the emphasis is on culture specific group information, while in
multicultural practice the emphasis is on recognizing that intellectual understanding of
visible racial-cultural groups does not necessarily translate into adequate multicultural
competence. A cross-cultural practice works from a culturally encapsulated perspective
(Lewis, 2002). Working in a multicultural context, the emphasis is not on only identifying
differences between different cultures (cross-cultural approach), but by using an approach
which reflects sensitivity to cultural influences (multicultural approach), thereby
recognizing that culture is a fundamental part of the individual (Penn, 2002). Middleton et
al. (2005) also state that learning about other cultures (cross-cultural approach) might be
impractical and not the only way to become culturally competent. They state that it is
more useful to be aware of what types of questions to ask and to be aware that there are
differences between people (multicultural approach). ―In order to dislodge the
misunderstandings of their clients, counselors must give clients the opportunity to air their
own views, however contrary to those of genetics professionals these may be‖ (Browner et
al., 2003, p. 1933).
In this overview it was argued that the focus of research to ascertain differences between
groups in order to provide culturally appropriate genetic counselling does not capture the
complexities of cultural influences during interactions. Instead, as Browner et al. (2003)
suggested, concentrating on the person and their views irrespective of their culture might
be more valuable. Interactional multicultural studies need to focus on what occurs during
the interactions and be careful not to ascribe cultural meanings to concepts and interactions
without sufficient evidence.
91 Chapter 4 Intercultural Communication
4.6 Research examining interactions
Studies examining multicultural genetic counselling interactions are few. One study
examined intercultural discourse from a perspective of identifying miscommunication
(Browner et al., 2003). In the sessions of prenatal genetic counselling for a positive
maternal screen, in Mexican-origin women, areas of miscommunication were shown to be
caused by: the professional‘s use of medical jargon; the professional‘s adherence to non-
directiveness; inhibitions of the professionals due to a lack of cultural sensitivity;
difficulties relating to translation; and problems regarding trust. The authors also found
that many women did not explain their own theories or ideas about the causes of genetic
conditions and were sceptical of genetic testing. Similarly, in earlier work, Rapp (1988),
who analysed observer field notes of antenatal sessions in women of Latina origin, also
found miscommunication.
The emphasis on differences between cultures is evident from other studies and although
the interactions were not approached from a miscommunication perspective, these studies
also hint at misunderstandings. In one study on antenatal sessions with women of Latino
origin, the women were most concerned about the health of their baby and rarely engaged
with the clinical and risk constructs presented to them, while the professionals focused on
communicating clinical information without regard for the women‘s lived experiences
(Hunt et al., 2005). Roberts et al (2005) argued for intercultural communication to be
approached from a different perspective. According to these authors, the patient and
practitioner talked themselves into an intercultural encounter and miscommunication was
due to language issues i.e. pronunciation, word stress, intonation, speech delivery,
grammar, vocabulary, lack of contextual information and style of presentation. Similarly,
92 Chapter 4 Intercultural Communication
Piller (2007) found that linguistic misunderstandings are often mistaken for cultural
misunderstandings. Piller (2007, p. 221) states ―The key question of Intercultural
Communication must shift from reified and inescapable notions of cultural difference to a
focus on discourses where ‗culture‘ is actually made relevant and used as a communicative
resource‖.
It is however, difficult to examine intercultural interactions, and studies approached from a
descriptive point of view need to be carefully designed. Unique findings did not seem to
emerge from Ellington et al (2007) research on African-American women at risk for breast
cancer. They found that the women in both pre- and post- test sessions contributed to 40%
of the conversation and that there were differences between pre- and post-sessions and in
discussions between sessions when the women had a positive or a negative result. These
results were found to be very similar to the research findings in cancer genetics session
where the patients and professionals were from the same culture (Ellington et al., 2005;
Ellington et al., 2006; Lobb et al., 2004; Pieterse et al., 2005). In one non-Western setting,
Hong Kong, it was found that the interactions were influenced by patients‘ socio-economic
circumstances and that these were drawn on to help patients make decisions (Pilnick &
Zayts, 2011). The providers further developed specific strategies in their attempts to adhere
to non-directiveness (Zayts & Schnurr, 2011). The reason for the differences between the
studies discussed above, could be due to the methods used. Ellington et al. (2005, 2006)
evaluated their sessions by making use of the RIAS scoring system to code sessions while
Pilnick and Zayts (2011) used socio-linguistic methods to analyse their data. Methodology
plays an important role in evaluating intercultural discourses and as Piller (2007, p. 221)
states ―Methodology and the philosophical approach to interactional multicultural research
need careful attention in order to examine and understand the intricacies involved in these
93 Chapter 4 Intercultural Communication
encounters‖. As argued by Koole and ten Thije (2001), intercultural communication
should be analysed in the same way as other interactions and the emphasis should be on the
common ground created by the participants. Phenomena can only be ascribed to ‗culture‘
if the participants make it relevant.
4.7 Summary
This chapter is a summary of the relevant literature on intercultural communication. The
researcher attempted to define culture and presented an overview of cultural beliefs in
South Africa. Studies regarding genetic counselling practice for people from different
cultures started to appear in the early 90‘s and the chapter describes the Eurocentric
approach in these investigations. A distinction was made between cross-cultural and
multicultural approaches and it was shown how the latter approach appreciates the person
rather than the culture to which the person belongs. The relevance of research findings
regarding incorporating culturally sensitive practices into genetic counselling was
discussed. Finally the difficulties in examining intercultural encounters were highlighted.
94 Chapter 5 Methodology
5 Chapter 5 Methodology
This chapter will describe the methodology employed in performing the present study. It
contains a description of the setting, details of the sample and the ethical considerations.
In addition, the theoretical framework that informed the research design and data analysis
process will be outlined.
There is some research available in the field of genetic counselling to draw on when
considering applying concepts in practice. However, as discussed in the introduction and
literature chapters of the thesis, emphasis has been on patient perceptions and theoretical
concepts, leaving the area of interactional studies under investigated. The understanding of
the process of genetic counselling therefore remains limited, with even less being
understood about multicultural interactions.
It is was therefore anticipated that research into the process of genetic counselling in the
South African context, utilizing qualitative methodology, would make a significant
contribution to the existing research in this area.
5.1 Study aims and objectives
When this research project was conceptualised, as mentioned in chapter one, the researcher
was questioning the effectiveness of the genetic counselling services offered to women in
state hospital services as the uptake of prenatal genetic diagnosis appeared to be low. The
researcher‘s initial assumptions were that the women in the state hospitals have different
attitudes and beliefs concerning childbearing, having a child with abnormalities, prenatal
95 Chapter 5 Methodology
diagnosis and termination of pregnancy. From these initial ideas, the researcher became
more interested in what occurred in these prenatal genetic counselling interactions. As a
result, the following research question was formulated:
What are the structural, interactional and analytic features of the
multicultural antenatal genetic counselling sessions conducted by genetic
counsellors from one unit?
The study objective, therefore, was to investigate the genetic counselling process in
multicultural encounters in prenatal genetic diagnosis sessions in antenatal clinics situated
in tertiary state hospitals in Johannesburg. Specifically the aims were to describe and
explain:
a. The genetic counselling process in these sessions.
b. The characteristics of the interactions between genetic counsellors and patients.
c. The features of the verbal and non-verbal interactions.
d. Some of the phenomena encountered during the interactions.
5.2 Research design
5.2.1 Qualitative approach
A qualitative research approach was selected for the study as with such an approach,
meaning, experience and understanding can be investigated, resulting in rich, thick
descriptions of the studied phenomena (Mouton & Marais, 1996). In qualitative research
96 Chapter 5 Methodology
the phenomenon is studied ‗from the inside‘, whether it is the view of participants or the
nature of the interactions (Flick, 2002).
The suitability of qualitative methods for research in the field of genetic counselling has
been discussed in detail in the previous chapters. Beeson (1997) highlighted the value of
such research and felt that genetic counsellors were in a strong position to make good use
of qualitative methods: ―You are the link between very different social worlds; you move
back and forth between the sharply focused work of molecular genetics and the complex
and highly emotional social worlds of the families of your counselees‖ (Beeson, 1997, p.
25).
Biesecker and Peters (2001, p. 195) compared the process of genetic counselling with a
‗black box‘ stating that we are only beginning to get a ‗glimpse‘ of its contents. They
advocated that carefully designed process studies can shed light on the components of the
sessions, the communication patterns and interventions used. It was shown that process
studies have elucidated several aspects of genetic counselling interactions, such as non-
directiveness and decision-making (Sarangi et al., 2004) and how counsellors take on
different ‗voices‘ in the session (Babul-Hirji et al., 2010).
Further motivation to employ a qualitative approach was based on the success of a study
which examined a genetic counselling interaction in an intercultural setting in
Johannesburg (Penn & Watermeyer, 2012; Tovell, 2004). This study was based on a
single genetic counselling session and used conversation and thematic content analysis to
explore the characteristics of the interaction. The methods proved effective in revealing
several significant communication characteristics and the dynamics of the session. This
97 Chapter 5 Methodology
research was conducted through the health communication project (HCP) based in the
School of Human and Community Development of the University of the Witwatersrand.
The HCP has performed research in several areas of health interactions and has identified
communication as the most common difficulty encountered by health care professionals in
the multicultural setting of South Africa. The HCP mainly draws on qualitative research
methods as a means of data collection and analysis, to examine health care interactions,
and the unique challenges of these interactions have been found to be amenable to these
approaches.
5.2.2 The design
The researcher opted to use more than one method to collect the data. Collecting data from
more than one source has been successfully undertaken in the South African context, by
the projects conducted through the HCP. In addition, approaching the phenomenon from
more than one angle allows for richer more trustworthy descriptions and a better
understanding of the phenomenon under investigation (Creswell, 2009; Silverman, 2004),
as multiple methods of analysing data allows the different realities of doctors, patients and
researchers to be brought together (Barry, 2002). Interpreting and cross-checking the data
in different ways adds to the validity of the study.
The data utilized in this study included:
▪ recording of genetic counselling sessions:
The genetic counselling sessions were video- and voice-recorded.
▪ semi-structured interviews:
98 Chapter 5 Methodology
A set of guiding questions were used to conduct interviews with the patient and
genetic counsellor participants separately after the genetic counselling sessions
▪ ethnographic observations:
Ethnographic approaches were used to describe the setting of the research. The
researcher made use of observation methods and written field notes to describe the
physical setting and ‗culture‘ of the antenatal clinics where the research was carried
out. The descriptions provided a context within which the results of the genetic
counselling interactions and the post counselling interviews could be understood.
The analytical framework was developed by engaging with the literature, data analysis
sessions and discussions with the project supervisor, researchers in the health
communication field and discourse analysts. Data analysis involved transcribing,
translating (where necessary) and analysing the recorded material. Reading, watching and
listening to the recordings allowed for ideas and themes to be developed based on the
theoretical framework. Transcriptions of the genetic counselling sessions and interviews
commenced soon after the first interview and continued throughout the data collection
period. Several months after data collection was completed, the checking and editing of the
transcripts continued.
The first phase of analysis involved obtaining a gestalt of the nature of the genetic
counselling sessions. This led to describing the overall structure of the session which then
allowed for the identification of specific aspects for further analysis.
In the initial planning of the project, the interview data were to be used to verify the
findings from the analysis of the sessions. However, the interview data yielded poor
99 Chapter 5 Methodology
results and it was not possible to analyse these in detail. Though the data had limited use,
some of the comments made by the genetic counsellors were included in the results as a
(very limited) way of strengthening some arguments. In the interviews the counsellors
commented on their perspectives and when these emerged in the sessions, it was included
in the discussions.
The quality of interview data is dependent on the facilitator‘s skills and experience in
probing and facilitating discussions during the interview process. However, the poor data
yielded in the interviews with the women in the study is thought to be linked to other
factors. The experience of researchers in the HCP is that patients in the setting are
generally not forthcoming in one on one discussions and that focus group discussions yield
richer data. Further, from the individual interviews in which the patients were asked to
comment on the service they received, it was found that they only made positive comments
about the professionals and the service. In addition they generally appeared passive in
their post-session interactions, a feature that was confirmed during data analysis as will be
shown in the result chapters.
5.3 The setting
The research was performed at two large tertiary level hospitals in Johannesburg: Rahima
Moosa Mother and Child Hospital (RMMCH) (previously known as Coronation Mother
and Child Hospital) and Charlotte Maxeke Johannesburg Academic Hospital (CMJAH)
(previously known as Johannesburg Hospital).
100 Chapter 5 Methodology
The two hospitals were the sites where the Division of Human Genetics holds prenatal
genetic diagnosis counselling clinics. The staff of the Division run weekly genetic
counselling clinics at these (and other) hospitals. By the time data collection started, the
prenatal diagnostic genetic counselling clinic at Chris Hani Baragwanath Hospital was no
longer operating efficiently and as a result, this site could not be included. All but two data
sets were collected at RMMCH. This hospital maintains a well organized, comprehensive
antenatal service and as a result, eligible patients were consistently available over the data
collection period. The service at CMJAH is less structured and as a result patient referrals
to this service was erratic resulting in only two sessions being recorded at that clinic.
5.3.1 Rahima Moosa Mother and Child Hospital (RMMCH)
RMMCH is situated in a suburb (Coronationville) in Western Johannesburg. It is a state
(public) hospital that provides paediatric and antenatal services mainly to patients from the
surrounding areas of Coronationville and Lenasia. As with other state hospitals, patients
are from the lower socio-economic groups who do not have access to private health care.
It has both inpatient and specialist clinics and treats between 25 000 and 30 000 patients a
year. Although the hospital offers a consistent and comprehensive service to mothers and
children, similar to the state health system in general in South Africa (discussed in chapter
4) the hospital is plagued by a number of challenges which includes financial difficulties
and shortage of beds, facilities and staff.
The Division of Human Genetics has a weekly genetic counselling clinic at RMMCH. The
genetic counselling clinic is situated in the Specialist Clinic which, at the time of data
collection was staffed by three nurses and one administrative assistant. The cardiologists
101 Chapter 5 Methodology
and the geneticists share the rooms in the clinic. It has a waiting area, a total of seven
consulting rooms, an administration/tea/weighing room and the nurses‘ station is in the
passage. The patient files are kept at the clinic in cabinets in the consulting rooms.
The genetics staff see prenatal as well as paediatric cases. The patients are required to be at
the clinic at 7am on the day of the appointment and numbers are assigned in the order in
which they arrive. While waiting for their names to be called, patients can watch
television. The women, their children and other family members and friends sit in the
waiting room. The clinic administrative staff make bookings, arrange follow-up
appointments and other referrals, file patient records and are responsible for the general
running of the clinics. A list of names of the booked patients for the genetics clinic is
faxed through to the Division of Human Genetics the day before the clinic.
The genetic staff allocated to the clinic include two medical geneticists and two genetic
counsellors. In addition genetic counselling students, medical genetics registrars and
undergraduate medical students (sixth year) of the University of the Witwatersrand attend
the clinic and observe cases. The medical geneticist in charge of the clinic assigns cases to
counsellors and clinicians, who start seeing patients as soon as the formalities are
completed.
The genetic counselling sessions usually take about one hour but can range from 45 to 90
minutes. Once cases are assigned, counsellors take their patient files and other written
documentation and study the notes. The counsellors and doctors usually go to the waiting
room and call the patient; greet them outside and invite them into the
102 Chapter 5 Methodology
counselling/consulting room for the session. At the end of the session they walk with the
patients to the nurses‘ station to arrange follow-up appointments and/or other referrals.
5.3.2 Charlotte Maxeke Johannesburg Academic Hospital (CMJAH)
CMJAH is situated in Parktown, in Northern Johannesburg. It is a state (public) hospital,
with 1088 beds, which services patients mostly from Gauteng province but also
neighbouring provinces. As with RMMCH, patients accessing the service are generally
from lower socio-economic groups who cannot afford private health care services. The
hospital offers both in-patient and specialist out-patient services and serves as a referral
hospitals for other hospitals in the region. It is the main teaching hospital of the University
of the Witwatersrand and the University medical school is located in the hospital. Though
CMJAH is a tertiary hospital that provides specialist services in all areas of medicine the
hospital has the same staffing, financial and management challenges, as other state health
services in South Africa.
The Division of Human Genetics has several genetic clinics at the hospital, including a
weekly prenatal diagnosis clinic, which is held on the day that a fetal medicine specialist is
available at the clinic. During the time of data collection the clinic had moved to a
temporary location due to renovations. The area consisted of a large open space which was
used as a waiting area. There were three rooms, one room led into two other rooms,
available for consulting patients. The two inside rooms were used by HIV counsellors and
genetic staff had access to the outside room. The inside rooms could only be used if they
were not being used by the HIV counsellors. Thus the genetic counsellors had many
interruptions as various patients and staff passed through.
103 Chapter 5 Methodology
At the time of data collection, there were two sonographers who performed the routine
ultrasound evaluations, one antenatal nursing sister and three fetal medicine clinicians who
worked on different days. The nursing sister co-coordinated the bookings for the
sonographers, the fetal medicine clinicians and genetic counselling clinic. The number of
patients referred varied a great deal as the hospital did not consistently provide a
comprehensive antenatal service and the fetal medicine experts were not always available.
This resulted in only two sessions being recorded at CMJAH.
At the time the genetic counselling clinic was staffed by two genetic counsellors, students
and registrars. The counsellor in charge of the clinic phones for the patient list or
sometimes the nursing sister phones to inform the counsellor in charge of cases booked for
the day. Similar to the procedures at RMMCH, patients, once they arrive at the clinic,
report to the nurses‘ station and the nurse collects their antenatal cards and hospital file.
The counsellors arrange the necessary documents in their consulting room and then call the
patient for the session.
5.3.3 Patient referral procedure
The women seen for prenatal genetic counselling at the two clinics described above were
referred by medical practitioners, fetal medicine specialists, nursing staff and/or
sonographers at the antenatal and ultrasound clinics of the hospital. There were also
referrals from nursing staff at the surrounding feeder clinics of the respective hospitals and
private medical practitioners. Women were referred for genetic counselling if they were at
an increased risk of having a baby with an abnormality, and/or:
104 Chapter 5 Methodology
Were of advanced maternal age (over 35 years of age),
Had abnormal ultrasound findings (fetal abnormalities or markers) or
Had a significant family history (previous abnormal child or genetic condition in
the family).
In the state service, any woman who is over 35 years of age or who has a history of a
genetic disorder is referred for genetic counselling. These referrals are usually made by the
nursing staff and medical practitioners in the antenatal clinics. Women who are less than
22 weeks pregnant at the time they book for antenatal care receive a prenatal ultrasound
evaluation by the sonographers. Women found to have fetal abnormalities or markers are
referred to the fetal medicine specialists who, after assessment, refer them for genetic
counselling.
5.4 The participants
5.4.1 Patient participants
The patient participants were women referred for genetic counselling. All but two of them
were South African citizens from the Black African population group. One woman was
from the Democratic Republic of the Congo and her first language was Ibo and one was
South African of mixed ancestry who spoke Afrikaans. All the women could speak
English, and were from lower socio-economic groups. There were 17 women who
participated in the study, but one was accompanied by her partner.
105
105 Chapter 5 Methodology
Table 5.1. Summary of the characteristics of the 17 patient participants
Session Pseudonym # YOB First language Marital Status Employment Education Child Pregnancy Gest Amnio
P01 Mary 1968 Sotho Married Unemployed Gr 12 1 Unplanned 21w No
P02 Dineo 1969 No Info Married Employed No info 1 Unplanned 16w No
P03 Ursula 1967 Tswana Traditional Unemployed Gr 10 2 Unplanned 17w No
01 Nompilo 1969 Zulu Single Employed Gr 12 1 Planned 23w No
02 Christinah 1972 Tswana Single Unemployed Gr 12 2 Unplanned 22w Yes@
05 Thembi 1973 Sotho Married Employed Gr 7 1 Planned 23w No
06 Johanna 1972 Afrikaans Single Unemployed Gr 10 3 Unplanned 32w Not offered
07 Phumla 1972 Ibo Married Employed Tech 2 Planned 22w Yes*
08 Rosie 1965 Xhosa Married Employed Gr 11 3 Unplanned 12w No
09 Lerato 1970 Zulu Single Employed Gr 8 3 Planned 20w Yes*
10 Ayanda 1968 Xhosa Married Employed Gr 10 3 Planned 16w No$
11 Nonhlanhla 1972 Tswana Single Employed Gr 12 0 Planned 18w Yes@
12 Bethinah 1968 Zulu Married Self employed Gr 9 4 Unplanned 28 w Not offered
13 Cynthia 1966 Xhosa Traditional Unemployed Gr 12 1 Planned 16 w No
14 Harriet 1969 No Info Single Employed No Info 3 Planned 15 w No
15 Bongumusa 1969 Sotho Divorced Unemployed Form3 (Gr 10) 4 Unplanned 20 w Undecided
16 Wilhelminah 1969 No Info Single Employed No Info 1 Unplanned 26 w Not offered
# The women were given pseudonyms to protect their identities
* Initially requested an amniocentesis but did not have the test
$ Had an infant with Down Syndrome – passed away
@ Amniocentesis outcome: Christinah normal boy and Nonhlanhla a normal girl
106 Chapter 5 Methodology
In the post session interviews, the women were asked about their ages, first language,
marital and employment status, level of education and number of children. The researcher
used the information from the sessions as well as the patient files to obtain information as
to whether the women elected to have an amniocentesis performed and if available, the
outcome of the pregnancy. The information included is typical of the information
obtained in a genetic counselling session (Harper 2010). Table 5.1 is a summary of the
characteristics of the 17 patient participants.
5.4.2 Genetic counsellor participants
The counsellor participants were the genetic counsellors of the Division of Human
Genetics of the NHLS and the University of the Witwatersrand allocated to the clinics.
Six genetic counsellors conducted the genetic counselling sessions. Each counsellor
conducted between two and four sessions. The counsellors were referred to as counsellor
A, B, C, D, E and F respectively and pseudonyms were given to each to protect their
identities. The researcher purposely did not provide a detailed table which linked the
counsellors with their individual demographic information as this would compromise their
confidentiality. The counsellors were all white females conversant in English, but some
also spoke Afrikaans. At the time of data collection they were between 25 and 51 years of
age and they had between one and 20 years experience in genetic counselling.
Counsellors A, B and C were inexperienced (Inexp) while counsellors D, E and F had
more than 5 years experience (Exp).
Counsellor A – Sharon
Counsellor B – Bronwyn
Counsellor D – Jacquie
Counsellor E – Natasha
107 Chapter 5 Methodology
Counsellor C – Trisha Counsellor F – Charlene
Most of the counsellors had completed their Masters degree in genetic counselling through
the Division of Human Genetics of the University of the Witwatersrand and had
completed an internship or were in their first post graduate year as interns. One genetic
counsellor completed her degree at another university, but had done an internship in the
department. Another counsellor had a nursing background and had worked in the field of
genetic counselling in the Division of Human Genetics for more than 20 years. All the
counsellors were therefore familiar with the model of genetic counselling promoted in the
Division (described in Chapter 2).
5.4.3 Genetic counselling sessions
Although women with different indications for genetic counselling were eligible to
participate in the research, in all but one, the indication was advanced maternal age (AMA
35 years of age or older). In the one case, the woman had a previous infant with an
unconfirmed abnormality. Also in another session an interpreter was used as the woman
could not speak English. Both these sessions were excluded. In addition there were three
sessions recorded as part of the pilot study during the time of developing the question
guides. These three sessions were included in the final study as they met the inclusion
criteria (p.110). The three sessions were numbered P01, P02 and P03 (P refer to ―pilot‖).
5.5 Data collection procedure
Data collection involved the provision of information sheets, obtaining informed consent
(from the patients and the counsellor), conducting and recording the genetic counselling
108 Chapter 5 Methodology
sessions, conducting and recording the post-session interviews, ethnographic observations
of the setting, and maintaining self reflection (researcher). The researcher had assistants
to help with obtaining informed consent, conducting the post-session interviews and doing
the transcriptions and translations.
5.5.1 Research assistants
The researcher is the genetic counselling manager (and genetic counsellor by profession)
of the Division of Human Genetics and speaks English and Afrikaans only. Due to
concerns about coercion of subordinate staff, it was not advisable for the researcher to
conduct the counsellor participant post-session interviews. The researcher also did not
perform the patient post-session interviews, as the researcher could not communicate with
the patient participants in their first language (with the exception of one woman). Three
research interviewers were therefore employed to assist.
The Division of Human Genetics had a Medical Research Council (MRC) Community
Genetics researcher seconded to the unit. She was a professional nurse by training and
had research experience. Her first language is IsiZulu but she is also fluent in Sepedi and
Setswana (languages used by the majority of the local population). The MRC researcher‘s
role was to approach the women in the clinics to request their participation in the research,
obtain informed consent, conduct the post-session patient interviews and assist with
transcription and translation.
Two experienced genetic counsellors who were trained by and worked in the Division of
Human Genetics were employed to do the counsellor participant post-session interviews.
109 Chapter 5 Methodology
They were selected to assist with the research as they were experienced in interviewing
skills, had an understanding of the setting and the process of genetic counselling and were
not employed by the Division of Human Genetics at the time the research was conducted.
The researcher also had four other assistants, a psychology student, a genetic counsellor
and two typists, who helped with transcription, translation and editing. The psychology
student was in her final year of study and was a Sepedi speaker conversant in isiZulu and
Setswana. She transcribed and translated the post-session patient participants‘ interviews.
The psychology student, genetic counsellor and one of the typists assisted with
transcription of the genetic counselling sessions. The second typist assisted with
formatting the typed transcriptions in MS Word. The use of research assistants
particularly in transcribing is discussed in more detail on p.117.
5.5.2 Procedure
Informed consent forms were designed for the patient (Appendix A) and counsellor
participants (Appendix B). The MRC research assistant obtained informed consent from
them to participate in the research, in their home language.
Selection depended on the patients‘ suitability and willingness to participate. The number
of women booked on any counselling day varied greatly, from no patients to around six
patients.
Upon arrival at the respective clinics, the researcher or genetic counsellor/s at the clinic
identified women who met the eligibility criteria for participation. Each woman was then
110 Chapter 5 Methodology
approached by the MRC community genetics researcher and was taken into one of the
rooms where the research was explained and consent (or refusal) was obtained without the
researcher or the genetic counsellor/s being present. The patient participants received an
information sheet (see Appendix C) to keep and the consent form was completed. The
consent form made provision for the collected information to be used only for research or
for teaching and training purposes. Concurrently, the researcher or genetic counsellor/s set
up the recording equipment in the genetic counsellor‘s room. If consent was obtained, the
counsellor took the patient into the counselling room to initiate the session.
The eligibility criteria for inclusion in the study were as follows:
▪ Women, over 35 years of age who were pregnant and had an increased risk of
having an infant with a chromosomal abnormality.
▪ Pregnant women who had an increased risk of having a baby with a chromosomal
abnormality as a result of a screening test, or an abnormal NT in the fetus in the
first trimester or a positive Down syndrome screen in the second trimester.
▪ Pregnant women who had had three or more miscarriages in the first three months
of pregnancy
▪ Pregnant women who had been exposed to drugs, medications, alcohol or
infections during pregnancy
▪ Pregnant women who had had a child with, or a family history of a genetic
disorder e.g. Down syndrome, haemophilia, albinism, cystic fibrosis
▪ Pregnant women who had had a child with or a family history of a birth defect e.g.
neural tube defects, cleft lip and palate, clubfoot, congenital heart disease
111 Chapter 5 Methodology
Women who had a fetal abnormality or markers detected on ultrasound were excluded
because of the acute emotional reactions associated with hearing the unexpected news that
their baby had an abnormality. The researcher believed that it would have been unethical
to burden a woman with a research project at the time of such grief.
5.5.3 Recordings (Sessions)
Once informed consent was obtained and the participants agreed to take part in the
research, their genetic counselling session was video and voice recorded. The researcher
(or, in some instances, the genetic counsellors) assisted with setting up the recording
equipment. The sessions were recorded using both video (Sony Handycam DCR SR45E)
and audio (Sony ICD-SX56) recorders. The sound quality of the audio recording was
better than the video recordings and was used to check unclear sounds from the video
recordings. The genetic counsellor participants operated the equipment themselves and
started and ended the recordings.
In total, 19 genetic counselling sessions were recorded (three during the piloting process
P01,P02,P03)). Two sessions were excluded (reasons explained in previous section) and
therefore, the final data set consisted of 17 genetic counselling interactions (sessions).
The total recording time was 14 hours, 54 minutes and 38 seconds.
5.5.4 Interviews (post-session)
After the genetic counselling sessions, post-counselling interviews were conducted with
the patient and genetic counsellor participant separately using question guides (Appendix
112 Chapter 5 Methodology
E, F). In the majority of cases, the interviews with both patient and counsellor participants
took place at the clinic after the genetic counselling sessions. However, if the genetic
counsellor had to see other patients, her interview was conducted later in the Division of
Human Genetics.
Of the 19 recorded sessions where post-session interviews could be conducted with the
patient participants, only 12 post-counselling patient participant interviews were included.
One patient participant left the clinic before she could be interviewed, in another case
there was a problem with the recording and the data were lost, for the three pilot sessions
the interviews were not included as the researcher was still developing the question guides
and two further sessions (the mediated session and the session where the indication for the
referral was not AMA) were excluded.
In the case of the post-counselling interviews with genetic counsellor participants, 14
interviews were included. Of the 19 sessions, two sessions were excluded (mediated
session and session where the referral was not AMA) and no counsellor participant
interviews were conducted after the three pilot study sessions.
Complete data sets for the study, which included a video recorded genetic counselling
session, an audio recorded patient participant interview and an audio recorded genetic
counsellor participant interview therefore totalled 12.
5.5.5 Ethnographic observations
The researcher used her observations made from working as a genetic counsellor in the
clinics, as well as being present in the clinics during data collection and when working as
113 Chapter 5 Methodology
a genetic counsellor to write the description of the research setting. Members of staff
from the Division of Human Genetics and the respective hospitals were also consulted
regarding hospital procedures. An ethnographic description of the waiting room of the
RMMCH can be found in Appendix G.
5.5.6 Self-reflection
Self-reflection occurred throughout the research and I kept notes of my own ideas and
beliefs about what I had observed or heard. In addition, discussions with the research
supervisor, mentor and other colleagues provided opportunities for challenging
preconceived ideas. I presented preliminary data from the study at conferences and
received valuable comments from the audience which further challenged and shaped
research ideas. I continued to practice as a genetic counsellor throughout the project, and
was constantly aware of the effect the two activities, the practising of and analysing the
practice of genetic counselling, had on each other.
5.6 Pilot study
The methods to be used in the study were tested before data collection commenced. It was
particularly important in developing the question guides which would be used in the
patient and counsellor participant interviews.
Two question guides were developed, one for the patient participants and one for genetic
counsellor participants. The researcher constructed the question guides by considering the
objectives of the project and consulting with the supervisor. The question guides were
114 Chapter 5 Methodology
used to perform pilot interviews with one counsellor and two patient participants. The
researcher and the MRC research assistant conducted the interviews. These interviews
were recorded and the researcher, her supervisor and a colleague (experienced in the
genetic counselling field) amended the question guides.
The interviewers, MRC research nurse and two genetic counsellors, received training from
the researcher on the use of the question guides before the first interviews. The researcher
and the interviewers listened to the recording of the first interviews together and discussed
whether the questions asked and the interview process met the aims and objectives of the
project, and further changes were subsequently made. The final versions of the semi-
structured interview schedules appear in Appendix C and D.
Two short demographic questionnaires were developed, and aimed at collecting
information typically relevant in genetic counselling. For the patient participants, the
information required included: date of birth, ethnicity, first language, marital status,
employment status, income, highest level of education, area where participants live,
number of children, whether the pregnancy was planned or not, ultrasound information
and gestation at time of counselling (Appendix H). For the genetic counsellor
participants, the information included date of birth, ethnicity, first language, other
languages, years in the genetic counselling field, qualifications and background (Appendix
I).
The pilot study also involved testing whether the data collection process was effective.
When the pilot interviews were conducted with the participants, the process of obtaining
informed consent, setting up the recording equipment and recording the sessions were
115 Chapter 5 Methodology
tested. The impact this would have on the genetic service at the clinic was also
considered. It became apparent that only one session could be recorded on a particular day
and when the clinic was particularly busy, the counsellor interviews had to be conducted
at the counsellor‘s office after the clinic as the counsellor had to continue to provide a
service.
Data collection required very careful logistic co-ordination. For a genetic counselling
session to be included in the research, there had to be an eligible patient participant, a
genetic counsellor participant, a genetic counsellor post-session interviewer and the MRC
community genetics interviewer as well as the researcher, suitable rooms and video and
voice recorders. As only one video recorder was available, two sessions could not be
recorded simultaneously. Two voice recorders and two suitable rooms had to be available
as the post-session interviews with genetic counsellors and patient participants occurred
simultaneously. The genetic counsellors had to continue seeing other patients after their
research sessions and could therefore not always wait for the post-session patient
interviews to be completed before they were interviewed.
5.7 Analysis framework
5.7.1 Approach
The analysis is a hybrid approach which draws on principles of discourse analysis. There
is strength in drawing on different perspectives as Wood and Kroger (2000, p. 25) state:
―We propose, if you like, a kind of made-to-order rather than off-the rack discourse
analysis, a bricolage, in recognition of the different concerns of researchers‖.
116 Chapter 5 Methodology
Discourse analysis was selected to investigate the genetic counselling interactions as it is
based on the premise that language ‗is the medium for interaction‘ and therefore can be
studied to reveal the ‗way of doing things‘ (Wood & Kroger, 2000). The researcher was
interested in how the genetic counselling interactions occurred and what could be
understood about the way these were conducted. Therefore, the methods on which the
analysis of the data was based included Conversation analysis (CA), Theme-orientated
discourse analysis (TODA) (Roberts & Sarangi, 2005) and methodological considerations
in multicultural discourse analysis (Koole & Ten Thije, 2001).
5.7.2 Transcription
Data analysis starts with producing transcripts of the recorded material. Simply put
transcription is, a process of producing typed manuscripts of recordings of interactions. In
reality, it is a complex process which allows all the nuances of the recording to be
available as a script. It is a process of ‗translating speech into language‘ (Ten Have,
2007). The process is vital to the analysis but is not a substitute, as the recordings are the
data for discourse analysis and not the transcripts.
The software programme Soundscriber (http://wwwpersonal.umich.edu/~ebreck/code/sscriber/)
was used to facilitate transcribing the video recordings and the software with the
electronic voice recorders (Sony digital voice editor 2) was used to transcribe the audio
recordings. These allowed for the recording playback to be manipulated, using speed
control and playback loops.
117 Chapter 5 Methodology
Video recordings of the genetic counselling sessions were downloaded to a computer as
windows media player files and the audio recordings of the session and the post-session
interviews with the participants were downloaded as digital voice files using the software
provided with the voice recorders. Transcripts were typed in MS word documents.
It is debatable whether the analyst should do his/her own transcribing or whether this
should be done by research assistants (Wood & Kroger, 2000). The argument is that it is
only after repeated listening to the recordings and reading of the transcripts that the
analyst becomes aware of phenomena in the data (Ten Have, 2007). However, as
transcription is a laborious process, with one hour of recording taking up to 20 hours to
transcribe, the researcher chose to obtain assistance. As discussed in section 5.1.1,
research assistants helped with the transcribing. The researcher however, still listened to,
viewed the recordings and edited the basic transcripts produced by the research assistants.
As this required repeated listening and viewing of the videos, it allowed the researcher to
engage with the material from the beginning while saving some time in producing the
transcripts. For the patient participant interviews however, the researcher had to rely on
the research assistants as these interviews were not conducted in English.
When producing a transcript, it is important to note that there is no perfect transcript
(Wood & Kroger, 2000). It has been questioned whether all details such as pauses,
intonation, overlapping speech, laughter, breathing (inspiration and aspiration) and
emphasis need to be included (Sidnell, 2009; Wood & Kroger, 2000). Jefferson (2004)
argues that the nuances allow the details to be explored which can be easily missed by just
ensuring that words and turns are transcribed, and that it is in the detail that new and
interesting phenomena are discovered in the ways in which conversation is organized.
118 Chapter 5 Methodology
However as Ten Have (2007) points out, it not only takes time and practice to make
transcriptions, it also takes time and practice to learn how to read them. It may not be
ideal to produce a transcript at the level of detail required by the Jefferson conventions. A
balanced needs to be found, and especially with novice researchers it is useful to start with
a simplified version and add detail as necessary (Wood & Kroger, 2000). As a result, the
researcher‘s approach involved producing basic transcripts with detail added to selected
sections. The first step involved transcribing the content and the participants‘ turns. This
was done by listening and re-listening to the recordings several times. Once the basic
transcripts were completed, the researcher checked and added detail. This round involved
checking the accuracy of the turns, overlapping speech and pauses. The basic transcripts
of all the genetic counselling sessions and interviews were formatted by adding line
numbers, margins, spacing and font before printing. The completed printed transcripts
were used for the analysis. Sections identified from the first line analysis were then further
transcribed by the researcher and detail, such as emphasis and intonation and breathing
(inspiration and expiration) was added. The transcription symbols used were based on
Jefferson‘s transcription conventions as found in Schegloff (2007). The list of
transcription conventions used can be found in Appendix J (an insert is included in the
thesis for easy reference).
Thus far, only the transcription of verbal elements has been considered, by only including
the verbal elements, the detail that could be discovered from the non-verbal interaction
would be missed. However transcribing non-verbal elements is a challenging task. More
importantly, as discussed in the background chapter, it is even more difficult to analyse or
make claims based on the non-verbal aspects. In exploring non-verbal aspects, some
researchers have identified specific phenomena which they wanted to study further (Ten
119 Chapter 5 Methodology
Have, 2007). Heath (1986) developed a system of non-verbal transcription conventions.
The participant‘s non-verbal actions were denoted above the verbal elements. They
involved gaze and body orientation amongst others. With regard to the non-verbal
elements, the researcher based the transcription on Heath‘s conventions (Appendix J), but
only gaze and body orientation were denoted in this study. As will be shown the
predominant orientation in the all 17 sessions were that the two participants faced each
other. In the result section of the thesis select comments will be made on non-verbal
behaviours based on what emerged from the data and what the researcher thought to be
significant.
5.7.3 Data analysis
The researcher approached the analysis without having any conscious preconceived ideas
of what the data might show. This is referred to as ‗unmotivated looking‘ (Flick, 2002;
Ten Have, 2007). The researcher was conscious of this frame of mind or ‗open-
mindedness‘. The balance between open-mindedness and drawing on the researcher‘s
skills and experience was however considered. Entering the analysis process without any
preconceived ideas would allow the researcher to engage with the data and allow patterns
and themes to emerge. As the researcher is a practicing genetic counsellor, this complete
‗blank slate‘ state was impossible. In attempts to keep the balance, emphasis was placed
on maintaining a reflexive stance during the research process.
Data analysis started with the production of transcripts as described in the previous
section. Making observations is achieved by looking closely at the data which can be done
by the researcher reading and viewing the data, as well as in data sessions where a group
120 Chapter 5 Methodology
of analysts watch and discuss the data together (Sidnell, 2009; Ten Have, 2007). By the
time the transcripts were in a hard copy format, the researcher had read and viewed the
sessions several times and some features were noted. The researcher took one genetic
counselling recording to a data analysis session with her supervisor and a researcher
experienced in discourse analysis. The video was viewed and interesting features were
noted and discussed. The researcher then repeated the process with all the sessions, made
observations and took notes.
From these initial observations particular phases in the interactions were observed. Based
on research by Sheon et al. (2010) this allowed a ‗sequence map‘ to be constructed in
which the phases were differentiated from each other by means of colour. One session
was selected and independently rated by the researcher and another professional in the
field of genetic counselling. Both identified the overall structure and the boundaries very
similarly. Any disparities were discussed and taken into consideration when the
researcher applied the process in identifying the phases in the other genetic counselling
sessions. Once the overall structure of the session was identified, specific sections were
chosen for further analysis.
Data analysis drew on different approaches of which the focus was on discourse as a topic,
i.e. describing what the discourse was doing, what function it had and how these functions
were accomplished. Discourse approaches differ with regard to whether the focus is in the
detail of the conversations or in some aspect of the particular practice. Different
approaches have different strengths and the analysis borrowed from a number of these.
Researchers in the critical discourse tradition approach their analysis from the stance that
the broader social and cultural contexts influence the interactions between the participants
121 Chapter 5 Methodology
(referred to as macro), while researchers in the conversation analysis tradition argue that
social and cultural influences are only relevant when the participants in the interaction
show these are relevant (referred to as micro) (Korobov, 2001). Scholars in these two
disciplines are very clear on the distinction between their approaches and this tension
between the two has been the subject of many debates. The researcher felt both these
approaches were essential in understanding the genetic counselling interactions. As a
result the analysis process in the present study is explained as a top down approach which
refers to the macro aspects and a bottom up approach which refers to the micro aspects.
As the study progressed and the different components of the genetic counselling sessions
were noted, the researcher became aware that different methods captured different aspects,
nuances and essential elements of the phenomenon examined. For example, when the
overall structure of the sessions was considered, a framework drawing on conversation
analysis seemed to be most effective in revealing the interactional hybridity. During an
examination of the opening phase, a framework based on conversation analysis seemed to
be powerful in unpacking the dynamics of this phase. When examining the decision-
making sequences, which was less structured than the openings because of the nature of
this phase, an approach drawing on principles of both conversation and theme orientated
discourse analysis was used. The difference between directive and non-directive strategies
and an exploration of counsellor strategies seemed particular relevant dimensions to
explore during this phase. Similarly, in the counselling phase which looked at segments of
the interview where there was more patient involvement, with the counsellors acting as
responders, the same combination approach was used. At first glance this analysis method
may appear fragmentary, but in the philosophy of qualitative research, the data drove the
122 Chapter 5 Methodology
method of analysis and, as many writers have observed, examining the complexity of
interactions demand complex and multilayer aspects.
5.7.3.1 Conversation Analysis (CA)
CA as a particular type of analytical work, developed in the early 1960‘s by Harvey Sacks,
Emanuel Schegloff and Gail Jefferson (Ten Have, 2007), has a strong focus on analysing
the detail of the conversation resembling a micro analytical approach (Wood & Kroger,
2000). CA reveals information regarding turn-taking (who speaks first) and turn-design
(how speakers design the turn), the sequence organization (how one thing leads to
another) and repair organization (how mis-hearing or misunderstandings are dealt with)
(Schegloff, 2007).
CA was originally developed as a pure science with the aim of uncovering aspects of
sociality. It was later used to study talk in institutional interactions and to identify how
these interactions were organized (Ten Have, 2007). Some features of institutional talk
make studying it different from studying any kind of talk as there are, setting specific rules
that impose more restrictions in institutional talk. The institutions and their structures
have been criticised for these restrictions saying that they limit people‘s expression of
freedom. Some have been very critical of, for example, doctor-patient interaction.
Mishler‘s study (1984) in which he describes the voice of the life world and the voice of
medicine is an example of such a critical view. On the other hand, CA researchers argue
that such restrictions may be functional in some way in these institutional settings (Ten
Have, 2007). There is also debate as to the ‗generality of such institutional properties‘.
While institutional talk has several characteristics unique to itself which influence
123 Chapter 5 Methodology
interpretations, others have warned that researchers must be conscious of not ignoring the
detail of the interactions and what these might reveal and how this can add to
interpretations.
It was important to base the analysis of the data in this study on CA principles as this
provided a way of examining the detail of the genetic counselling conversations.
Therefore the analysis was approached by making observations with regard to the
organization of the talk on the selected sections of the data, specifically examining
(Sidnell, 2009):
▪ Turn-taking organization – what is specific about the turn-taking
▪ Overall structural organization – an overall map of the typical phases
▪ Sequence organization – how one action leads to another (sequentially organised)
▪ Turn design – what talk is designed to do and ways in which this is achieved
▪ Epistemological and other asymmetry – asymmetry of participation, knowhow,
knowledge, and right of access to knowledge.
5.7.3.2 Theme-orientated discourse analysis (TODA)
Roberts and Sarangi (2005) developed a theme-orientated approach to discourse analysis
in the medical field. The motivation for this approach came from the fact that discourse
analysis is daunting as it involves analysis of vast levels and types of language and
knowledge. In addition, the themes in discourse analysis align with the concerns of
professionals working in their respective fields. Aligning the discourse analytical themes
with the professional concerns provides opportunities for ―joint problematization of
health-related concerns‖ (Roberts & Sarangi, 2005, p. 639). Although the findings from
124 Chapter 5 Methodology
such efforts will not necessarily lead to solving problems, it does provide a new way of
examining a particular problem.
The theme-orientated approach links analytic themes of discourse analysis to the most
relevant focal themes of professional concerns in medicine. The analytic themes
suggested by this approach include:
▪ Interactive frames and footing – what is relevant and appropriate
▪ Contextualization cues and inferences – what is meaningful in the context
▪ Face and facework – strategies related to politeness
▪ Social identity – age, gender race etc
▪ Rhetorical devices – use of language to influence or persuade
The focal themes suggested by this approach include:
▪ shared-decision making and
▪ mis-communication in intercultural interactions.
The theme-orientated approach suggested by Roberts and Sarangi (2005) is an applied
approach to discourse analysis. The approach in this analysis of medical interactions
lends itself to describing and understanding interactional phenomena in medical
encounters in a way that makes the findings relevant and practical to the professionals
working in the field.
The researcher also considered some of the analytic themes suggested by Roberts and
Sarangi (2005) in their theme-orientated approach to discourse analysis. The researcher
125 Chapter 5 Methodology
considered interactive frames and footing, contextualization cues and inferences, face and
facework, and social identity and rhetorical devices, as well as shared-decision making.
5.7.3.3 Methodological considerations in intercultural communication studies (ICC)
Koole and ten Thije (2001) argue for a methodology of analysing intercultural
communication in the same way as analysing ordinary communication. Intercultural
communication is often analysed as communication between different cultures and this
could result in miscommunication. Rather than using the term intercultural
communication, the authors use intercultural discourse which implies that the participants
create a shared common ground of meaning and practices. Their proposed analysis
therefore aims at the reconstruction of the common ground, which may be characterized
by, but is not necessarily miscommunication.
The method proposed by Koole and ten Thije (2001) is focused on the common ground
constructed by the participants as well as aspects of this. The common ground is termed
‗discursive interculture‘. Their approach considers intercultural communication as
ordinary communication and they argue that for the communication to occur in the first
place, the participants must share some common knowledge. This shift in emphasis
implies that information can be shared and that the participants can learn from each other.
In the analysis, miscommunication is seen as a ‗lack of sharedness‘ and this becomes
important in understanding the interaction. How the participants deal with the lack of
sharedness, whether they adapt or whether they retain it, are strategies in the interaction.
‖Using this focus, analysts can move from the perspective of communicative actions as
being shaped by culture to seeing them as shaping culture‖ (Koole & Ten Thije, 2001, p.
585).
126 Chapter 5 Methodology
A key consideration in approaching the analysis in the present study was how to include a
multicultural perspective. An observation made early on in the analysis was that obvious
‗cultural differences‘ were not apparent. The argument of Koole and ten Thije (2001)
regarding analysing intercultural communication in the same way as ordinary
communication was considered throughout the analysis. Attention was paid to how the
participant‘s reconstructed a common ground of meaning and practices, which may not
necessarily be miscommunication, and how sharedness in creating a common ground and
a lack of sharedness could result in miscommunication, as well as how the participants
deal with these phenomena in the interactions.
The researcher did not follow specific steps in the analysis as none exist (Heritage &
Maynard, 2006; Sidnell, 2009; Ten Have, 2007; Wood & Kroger, 2000). ―Analysis
essentially consists of a detailed and repeated reading of the discourse against the
background of the discourse-analytic perspective‖ (Wood & Kroger, 2000, p. 95). The
analysis approach taken was a repetition of interpretation and pattern analysis. The
analysis involved a continuous moving from a ‗bottom-up‘ to ‗top-down‘ and ‗top down‘
to ‗bottom-up‘ approach, considering specific sections individually and the discourse as a
whole. This was repeated a number of times until the researcher was satisfied that there
was sufficient evidence for the claims. During the analysis, the researcher looked for
patterns, made claims about these and provided evidence in the form of excerpts from the
data. The excerpts contain details of verbal elements and selected non-verbal elements
(appendix J). In the transcripts ―C‖ is for counsellor and ―P‖ is for the woman, in one
session where the woman‘s partner attended clinic with her, he was represented as ―P1‖.
Even though not all the transcribed elements are commented on in all the excerpts, it was a
127 Chapter 5 Methodology
deliberate decision to include these due to uniformity and in keeping with the principle of
transparency. Figure 5.1 shows the data analysis process.
Figure 5.1. Visual representation of the data analysis process.
Phase I - Initial viewing and reading of transcripts
▪ Editing of transcripts by viewing and listening to
recordings
▪ A data analysis session with researcher and supervisor
▪ Viewing of other sessions
▪ Producing a sequence map
▪ Checking of sequence map by independent person
▪ Phases identified for further analysis
Openings
Decision-making
Life world
To
p-D
ow
n
Bo
tto
m-U
p
Phase II - Repeated viewing and reading of
transcripts based on Principles from CA, TODA,
ICC
▪ Further analyses were performed on the 3 selected
phases
▪ Transcripts were repeatedly viewed and read
▪ Analysis involved a bottom up and top down
approach considering the concepts in each (see
boxes below)
▪ Ideas were shaped by discussions with supervisor
and others in the field, data sessions and feedback
from presentation at conferences
▪ Turn-taking
▪ Overall structural organization
▪ Sequence organization
▪ Asymmetry or participation
▪ Exchange structure
▪ Topic control
▪ Setting and policing agendas
▪ Formulations
▪ Agency, frames and footing
128 Chapter 5 Methodology
5.8 Rigour
Reliability and validity are as important in qualitative research as in quantitative research.
The term rigour, or trustworthiness, of qualitative research refers to the worth of the
research outcomes (Brink, 1999; Burns & Grove, 2001).
There is disagreement about what defines good qualitative research and also whether
criteria for this should even exist (Dixon-Woods, Shaw, Agarwal, & Smith, 2004). Emden
et al. (2001), in a study attempting to identify when qualitative research is good and
whether its claims should be taken seriously enough to change teaching and clinical
practices, or serve as an example of good research, concluded that for qualitative research
to be of high value it has to:
pay attention to detail with honesty and trustworthiness (process)
be written with impact, effect, meaning and believability (writing)
relate usefully to practice and other/ongoing research (outcome)
show that quality is important, consensual and achievable (excellence).
The researcher considered these points throughout the research process. As discussed in
the previous sections, the philosophical perspective, process of data collection,
methodological approach and how the paradigm translated into an analytical framework
were described.
In this study the researcher collected data from different sources i.e. the counselling
sessions, interviews with the participants and ethnographic observations. This
129 Chapter 5 Methodology
triangulation of data sources is a way of verifying outcomes and makes for more
trustworthy results (Creswell, 2002; Silverman, 2004).
In discourse studies, the reliability is greatly affected by the quality of the transcripts, as
the transcript is a translation of the features of the actual interaction (Silverman, 2004).
For this study, to ensure the best transcripts possible, the sessions were both video and
voice recorded. These recordings provided additional sources from which inaudible
words or phrases could be checked. The process of transcribing was done by research
assistants and the researcher. The research assistants produced basic transcripts ensuring
accuracy in terms of content and turns. The researcher edited the basic transcripts by
systematically checking first for content, followed by turns and overlapping talk, followed
by pauses. Details such as intonation were added next by first recording all the rising
intonations, then all the falling intonations and then emphasis. For the interview data,
only turns and content were important. All transcripts were produced by the research
assistants and checked again by the researcher for the transcriptions of the counsellor
participant interviews. The community genetics researcher checked the transcripts for the
patient participant interviews that were not in English.
The interpretations of qualitative data are influenced by the researcher‘s understanding of
ideas and concepts. Dixon-Woods et al., (2004) suggested that clear research questions,
sufficiently supported claims and clearly integrated conclusions add to the validity of a
study. The development of ideas on the study material was shaped by data analysis
sessions and discussions with the supervisor and other experts in the field. Excerpts from
the sessions, thus allowing others to evaluate the claims made, illustrated the researcher‘s
observations and interpretations of the phenomena.
130 Chapter 5 Methodology
The partiality of the researcher was acknowledged from the onset of the study. The
researcher is a practicing genetic counsellor and trainer of genetic counselling students.
As a result, the researcher had preconceived ideas about how genetic counselling has been
and should be conducted. The researcher was aware of the tension between practicing as a
genetic counsellor and evaluating the practice. Being a counsellor might have affected the
way the results were interpreted, while concurrently being a researcher may have affected
the interactions with patients. A major limitation in an analysis is a failure to depart from
old ideas (Burns & Grove, 2001). In an attempt to address this, reflective notes were kept
and ideas, thoughts and challenges were addressed by discussions with the research
supervisor, an experienced mentor in the field of genetic counselling and the counselling
skills supervisor.
5.9 Ethical considerations
5.9.1 Obtaining consent
The study was submitted for consideration to the Committee for Research on Human
Subjects (medical) of the University of the Witwatersrand for clearance of research
involving human subjects, and or patient records (see Appendix K). Permission to
perform the research in the respective hospitals was obtained from the hospital
superintendents (Appendix L, M).
Informed voluntary consent was obtained from each study participant. The patient
participants were considered a vulnerable group as they were receiving a service and could
have felt compelled to give consent. Tovell (2004) reported that in her study, informed
131 Chapter 5 Methodology
consent was initially obtained in English by the genetic counsellor, but that the potential
participant later refused to participate when the interpreter, who spoke isiZulu, requested
consent. This highlighted the importance of language and professional roles when
attempting to obtain true informed consent. This was carefully considered and therefore
informed consent was obtained in the participants‘ own language. Obtaining consent in
the home language seemed effective as some of the women felt comfortable in declining
to participate in the research.
The genetic counsellor participants were subordinate to the researcher and this raised
concerns about coercion. This was addressed when ethics approval for the research was
sought. At the time of protocol submission and ethics approval, three of the participating
genetic counsellors appeared before the University of the Witwatersrand‘s ethics
committee to clarify how they felt about participating in the research. The genetic
counsellors then made the decision to participate and it was a mere formality to obtain
their informed consent when suitable patients were identified. One genetic counsellor
however chose not to participate in the research. During data collection, the genetic
counsellors were approached by the community research assistant in the week of the clinic
to ask if they would participate, as she knew who was allocated to the clinics. Part-time
genetic counsellor interviewers conducted the post-session interviews and they had the
informed consent form which the counsellor participants had completed.
5.9.2 Confidentiality
Due to the pitfalls of qualitative research in which small samples from small groups are
used, there is a risk that the participants might be identified. This was kept in mind and
132 Chapter 5 Methodology
every attempt was made to protect the participants‘ identities in the write-up of the project.
However, there is only one site in Johannesburg (the Division of Human Genetics of the
NHLS and Wits) that employs genetic counsellors and it is therefore impossible to provide
total anonymity to the genetic counsellors involved in the research.
The risk of breach of confidentially was higher for the genetic counsellors than the patient
participants. In an attempt to protect the identity of the former group, pseudonyms were
mentioned in the sessions when names were used, the counsellors were coded as
counsellor A, B, C, D, E and F and only the researcher had access to this information. It is
also for reasons of confidentiality that in the results section a summary of counsellor
information was not included. The researcher felt that if for example counsellor A was
shown to have 5 years of experience, the counsellors and others in the field would be able
to identify this counsellor. Instead counsellors were grouped as either experienced when
they had more than 5 years experience or inexperienced if they had less than 5 years
experience.
In further attempts to maintain confidentiality, access to the video and voice data was only
made available during select research and data analysis discussions with a few
experienced colleagues and was not shown to other audiences. Only excerpts of the
transcripts of sessions were included in presentations to wider audiences at conferences.
5.10 Summary
In this chapter the setting, participants and methods were described in detail. The research
was conducted at two academic hospitals in Johannesburg with women of advanced
133 Chapter 5 Methodology
maternal age. The genetic counselling interactions of 17 women were recorded and
interviews were conducted with the women and the genetic counsellors after the sessions.
The methodological approach was a qualitative hybrid design based on principles of
discourse analysis. The sessions were analysed in their entirety and different phases were
identified. Three phases were selected for further analysis; openings, decision-making and
counselling segments. The analysis involved a continuous ‗bottom-up‘, ‗top-down‘
approach considering the turn design, topic control, agency and intercultural discourse
amongst others.
Finally, this chapter contains a description of how the rigour, validity and reliability of the
study were considered as well as the ethical issues encountered by the study.
134 Chapter 6 Results I - Overall Description of the Sessions
6Chapter 6 Results I - Overall Description of the
Sessions
The first phase of analysis involved examining the genetic counselling session in its
entirety. The analysis was approached with the aim of obtaining an overall impression of
the sessions. This initial phase of analysis involved watching the video recordings,
reading the transcripts and describing the interactions. This was largely a descriptive
process drawing on some principles of CA (Sidnell, 2009) and TODA (Roberts & Sarangi,
2005). CA‘s focus on the micro analysis of sequences was particularly suitable to explore
the structure of the sessions while TODA allowed focussing on different functions.
It became apparent that the genetic counselling sessions had a clearly discernible structure.
The structure consisted of different components which could be distinguished from each
other based on the goal each was attempting to achieve in the session (function) and it was
evident that the different phases had unique interactional structures (Sarangi, 2000; Sheon
et al., 2010). The phases were mapped along a continuum in which each phase was
demarcated by a different colour, resulting in what Sheon et al. (2010) referred to as a
‗sequence map‘.
As stated in chapter 5, the excerpts shown are uniform with regard to the transcription
conventions used. The transcriptions show the detail seen in traditional CA conventions.
Due to the hybrid nature of the analysis, not all the features captured in the transcripts may
be commented on as only those aspects relevant to the particular analysis focus will be
135 Chapter 6 Results I - Overall Description of the Sessions
discussed. This choice was deliberate as it not only presented uniformity but is in keeping
with the principle of transparency.
This chapter is a discussion of the findings of the key characteristics of the different
phases of the sessions which are presented in the form of excerpts as illustrations. In the
excerpts where names and other possible identifying information are shown, pseudonyms
were used to protect the individuals‘ identities and these pseudonyms were kept
throughout the thesis when referring to the individual women (P), a partner (P1) and
counsellor (C).
6.1 The overall structure
All 17 genetic counselling sessions appeared to be similar in terms of the overall structure.
This clearly discernible structure was a key finding and little variation was observed
between the sessions of the different counsellors or between different sessions of a
specific counsellor. The researcher watched the sessions and made observations of what
occurred during the sessions. During this process, it became evident that the sessions
followed a particular order specifically with regard to four of the six identified
components. Four phases followed a particular order: the opening phase occurred at the
beginning of the session, followed by the information gathering phase, then the
information giving phase and the session ended with the closing phase. Two other
components, the decision-making sequence and the counselling segments were less
structured and could be seen as more artificial.
The decision-making sequences were defined as such by the fact that the counsellors and
women talked about aspects related or relevant to the decision of having or not having an
136 Chapter 6 Results I - Overall Description of the Sessions
amniocentesis. As a result this phase was more flexible and was seen to occur after or
during information giving but before the closing phase. The counselling segments were
identified because of the obvious contrast to the rest of the session in that the women took
up more interactional space. These were found to be particularly flexible and occurred
during any stage of the session. The researcher identified the phases and together with an
experienced genetic counsellor refined how these should be demarcated. It is
acknowledged that there is overlap between what was called a decision-making sequence
and a counselling phase and that some of the segment could very well fit into either
category.
The six identified components of the genetic counselling sessions were found to be:
opening phase
information gathering phase
information giving phase
closing phase
decision-making sequence
counselling segments
Figure 6.1 shows the sequence map. For each of the sessions, the time taken is shown as
minutes (m) and seconds (s) and the number of lines is shown as (L). It illustrates the
order in which the different components (opening, information-gathering, information-
giving and closing) occurred in each of the sessions and it shows that the decision-making
and counselling segments did not occur in any particular order. From the sequence map it
was possible to create a schematic representation of the structure of the genetic
counselling sessions. This representation is presented in figure 6.2. The outer circular
structure illustrates the flow of the session with the opening followed by information
137 Chapter 6 Results I - Overall Description of the Sessions
P01 Cns A 34m 6s (1198 L)
P02 Cns B 42m 38s (1115 L )
P03 Cns B 59m 31s (1451 L)
1 Cns C 53m 15s (1588 L)
2 Cns A 1h 3m 23s (1358 L)
5 Cns B 59m 02s (1283 L)
6 Cns A 50m 51s (1376 L)
7 Cns C 53m 54s (1256 L)
8 Cns F 52m 1s (1674 L)
9 Cns D 46m (1816 L)
10 Cns C 55m 44s (1681 L)
11 Cns A 47m40s (1861L)
12 Cns D 43m 33s (1648 L)
13 Cns E 1h 8m (1499 L)
14 Cns E 54m 54s (1253L)
15 Cns E 48m 53s (1284L)
16 Cns F 42m 58s (1625 L)
Openings Info Gathering Info Giving Decision Making Counselling segments Closing
Figure 6.1. Sequence map of the 17 genetic counselling sessions.
138 Chapter 6 Results I - Overall Description of the Sessions
Figure 6.2. Visual representation of the phases of the genetic counselling sessions
gathering, then by information giving, and by a closing. In the centre of the diagram is the
decision-making sequence with two arrows extending to the information giving and
between the information giving and closing phases, indicating that decision-making
sequences occurred during or after information giving. The second component in the
centre is the counselling segment with four arrows extending to all four outer phases,
illustrating that counselling segments occurred at any stage of the session.
6.2 Arrangement of the counselling rooms
The arrangement in the counselling rooms was very similar across all 17 sessions.
Depending on the space in the rooms, the counsellors and the women sat opposite each
other, facing each other directly, or they sat at the corner of the desk. Figure 6.3 shows
Opening Information gathering
Information giving
Decision-making Sequence
Closing
Counselling segments
139 Chapter 6 Results I - Overall Description of the Sessions
these two predominant positions. However, there were some subtle variations with
regards to the distance between the counsellor (C) and the woman (P), the angle of the
chair and whether the desk was on the right or left hand side of the counsellor. Appendix
N shows the set up in each of the sessions.
Session 09
Session 11
Figure 6.3. Set up in the counselling rooms
For most of the session the counsellors and the women remained in these positions and
their dominant frame of orientation (Robinson, 2006) was with their bodies and gaze
directed at each other. During the opening and information gathering phase, both the
women and counsellors often directed their gaze at the files placed on the desk or on the
counsellor‘s lap. Similarly during the information giving phase their gaze was
occasionally directed at the pictures/graphics which were either on the desk or on the
counsellor‘s lap. The counsellors were found to be either engaging with the ‗patient in
bureaucracy‘ (Robinson, 1998) when focusing on the records or the ‗patient embodied‘
when they assumed a face to face orientation. In contrast, during the decision-making
phase and counselling segments their gaze was almost exclusively directed at each other.
140 Chapter 6 Results I - Overall Description of the Sessions
The features described above serve to provide a general impression of the non-verbal
interactions in the genetic counselling sessions of the study. The focus on positioning,
gaze and orientation allowed the researcher to access some of the non-verbal features in
the sessions. However, this description is superficial and cannot depict the complex
interplay between verbal and non-verbal elements.
6.3 The components of the genetic counselling sessions
6.3.1 The opening phase
The opening phase represents the first few minutes of the interaction. It was the initiation
of the genetic counselling session and contained a number of activities. These activities
included: introductions, greetings and reference to the current research project, invitations
to ask questions, an attempt to establish the reason for referral and an explanation of what
the session was going to entail.
The current section will illustrate the different activities which occurred during the
openings. However, the emphasis will be on providing an overview of the phase and the
different sequences observed. The details of other emerging features will be discussed in
chapter seven. Excerpts are shown to illustrate the features. The excerpts show the details
of the verbal features of the talk as well as gaze and the orientation of the counsellor (C)
and the woman (P). An insert with the transcription conventions used is included.
The first activity during the opening was an introduction. Excerpt 6.01 is an illustration of
a typical introduction and shows the counsellor opening the session by introducing herself.
This is followed by a question to the patient regarding the pronunciation of her name.
141 Chapter 6 Results I - Overall Description of the Sessions
Both the counsellor and the woman looked at each other during the introduction while
they both focussed on the file when the counsellors asked how to pronounce the woman‘s
name.
Excerpt 6.01, Session 11, Couns A Inexp – An introduction
_____________ 1 C: Okay (2.0) _____________________________________ 2 so my name is Sharohhn (1.0) _____ 3 P: uhm ___________________________________________________ 4 C: and I’m from the genetics department (1.0) __________ 5 P: ((nods))
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 6 C: Okay >how? do you say your name< (.)
_ _ _ _ _ _ _ _ _
file 7 P: Nonhlanhla
The next excerpt (6.02) illustrates another activity namely the counsellor‘s attempt to
establish the reason for the referral. The excerpt shows the counsellor asking the woman
why she thought she was referred and the woman replying that she was referred for
counselling. Here the woman directed her gaze at the file when she was explaining why
she was referred.
Excerpt 6.02: Session 15, Couns E Exp – Reason for referral
_ _ _ _ _ _____________________________________________________________
file 26 C: Okay - hmmn Bongumusa do you know why? you are here?
_______________
27 today? (2.0)
_____ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 28 P: yes? they told me ah (.) I have to come for (.) ah
_ _ _ _ _ _ _ _ _ ______ file
29 what counselling
142 Chapter 6 Results I - Overall Description of the Sessions
Following on from the attempt to establish the reason for referral, the counsellor explained
what the session was going to entail, as can be seen in excerpt 6.03. The excerpt is taken
from the same session as excerpt 6.02, a few turns later. The explanation of what is going
to happen in the session was done over a number of turns in which the woman responded
with acknowledgments. Both the counsellor and the woman looked at each other during
the counsellor‘s explanation.
Excerpt 6.03: Session 15, Couns E Exp – Reason for attending clinic
________________________________________________________________ 38 C: okay - so Bongumusa - at this? clinic we see all women, ______________________________________________________________ 39 that come to ((name)) hospital? - who are older than _______________________ 40 thirty (.) five years ________ 41 P: >Yes< _____________________________________________________________________ 42 C: to talk about what are the <problems that can happen in a ______________________________________________________________________________ 43 pregnancy> (.) when a woman is older (.) and what are the tests _______________________________________________________________________________ 44 that we can <do> to <offer>you (.) to look for those problems (2.0) _______ 45 oka:y. _____ 46 P: Ja
Others, who have studied genetic counselling interactions, have reported similar activities
during openings to those observed in the current study; greetings (Armstrong et al., 1998;
Hodgson et al., 2009) and establishing the reason for the referral (Armstrong et al., 1998;
Babul-Hirji et al., 2010; Butow & Lobb, 2004; Rapp, 1988). These activities resemble
those that have been described in medical encounters: greetings (Byrne & Long, 1976;
Heath, 1981; Robinson, 1998), checking names, seating patients, reading medical records
and checking equipment and were referred to as the preliminaries (Heath, 1981, 1986)
which were found to precede establishing the reason for the visit (Byrne & Long, 1976;
Heath, 1981, 1986). In this respect, genetic counselling resembles medical interactions
143 Chapter 6 Results I - Overall Description of the Sessions
more than counselling encounters which have been described as consisting of an artificial
structure (Labov & Fanshel, 1977; Silverman, 1997). The opening sequences in the
genetic counselling sessions can be described as helping the patient and the counsellor
establish who they are talking to, the reason for them being in the interaction and what the
women can expect from the session.
When examining these different activities, different sequences were apparent. In CA
terminology this is referred to as an adjacency pair which is characterized as comprising a
minimum of two turns (Schegloff, 2007). Such adjacency pairs are described as consisting
of first pair parts (FPPs) and second pair parts (SPPs) which are related to each other, for
example, a question requires an answer. Several distinct sequences were evident in the
opening. In excerpts 6.01 and 6.02 a similar organization was seen and in both excerpts
the counsellor asked questions (excerpts 6.1 lines 6 and excerpt 6.2 lines 26-27) and the
woman provided answers. In CA terminology this is a ‗question and answer sequence‘
(Schegloff, 2007) and in HIV counselling it is referred to an ‗interview format‘
(Silverman, 1997). One of the sequences observed during the openings is therefore a
question/answer sequence:
FPP Question by counsellor
SPP Answer by woman
Another sequence was evident as seen in Excerpt 6.03. Here, there was an explanation
given or information being communicated by the counsellor while the woman responded
with acknowledgments. CA refers to this as ‗tellings‘ (Schegloff, 2007) while in HIV
counselling it is termed an ‗information delivery format‘ (Silverman, 1997). As with
question/answer sequences, the term explanation/acknowledgment sequences will be used
144 Chapter 6 Results I - Overall Description of the Sessions
when referring to ‗tellings‘. Thus another sequence was evident during the openings
which occurred when the counsellors communicated information. These were
explanation/acknowledgment sequences:
FPP Explanation/information by counsellor
SPP Acknowledgment by woman
6.3.2 Information gathering sequence
The information gathering phase, which followed on from the opening, was characterised
by the counsellor obtaining different kinds of information from the patient. It typically
involved obtaining information for the patient records such as name, date of birth, address
and contact details. Information regarding biological relationships and family members‘
health took up the largest proportion of this phase. The transition from the opening phase
to the information gathering phase was identifiable as this occurred after the counsellor
had explained what was going to happen during the session. It was mostly signalled by a
transition marker such as ‗okay‘ or ‗all right‘ followed by an introduction to information
gathering with a statement such as ‗let me just get some information from you‘. This
phase ended when all information was obtained and was characterised by the counsellor
posing several questions to the women to which the women provided answers. The
counsellors obtained different types of information from the women. Excerpt 6.04 is an
example of obtaining demographic information. It shows the counsellor asking about the
woman‘s date of birth and her employment status. This information is recorded in the
patient folders.
145 Chapter 6 Results I - Overall Description of the Sessions
Excerpt 6.04: Session 16 Couns F Exp – Demographic information
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 162 C: OOkayO(.) and your date? of birth? ___________________________________ 163 P: Twenty one November 1969
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ __ _ _ _ _ _ ____________________________
file 164 C: O Twenty one November 1969 O s:o how old are you now.
_ _ _ _ _ _ _ _ _ _ _
file 165 P: I’m thirty-nine
_ _ _ _ _ _ _ _ _
file 166 C: thirty-nine.
_ _ _
file 167 P: uhm
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 168 C: OokayO turning fourty in November _____________ 169 P: Ye:s mam
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ __________________
file 170 C: Wilhelmina? are you? working? at all? ________________________________________ 171 P: Yes? I’m? working? in the crèche?
_ _ _ _ _ _
file 172 C: crèche ___ 173 P: yes
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 174 C: okay? what kind of work do you do in the crèche _______________ 175 P: I’m cooking _______ 176 C: okay?
In excerpt 6.05, information regarding biological relationships was obtained. Details
regarding the woman‘s family history, such as number of siblings, uncles, aunts, cousins,
nephews and nieces and their health were also collected. The counsellors used the
information to draw a family pedigree in the patient folder. The excerpt shows the
counsellor asking about the woman‘s brothers and sisters.
146 Chapter 6 Results I - Overall Description of the Sessions
Excerpt 6.05: Session 06 Couns A Inexp – Biological relationships
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ________
file 342 C: OokayO. Now Johanna your brothers and sisters. how _______________________ 343 many do you have. ______________________________________ 344 P: one sister (.) and two brothers. _______________________________________ 345 C: All from the same mom and dad. ___ 346 P: Ja.
Information regarding the woman‘s current pregnancy, gestation and health during the
pregnancy was obtained and recorded in the patient folder. Excerpt 6.6 shows how the
counsellor obtained such a pregnancy history.
Excerpt 6.06: Session 06 Couns A Inexp – Pregnancy history
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ______________ _ _ _ _ _ _ _ _
file file 643 C: OOkayO. Now tell? me about this pregnancy, have you?
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ________________
file 644 been healthy during the pregnancy? ___ 645 P: ja? ______________________________ 646 C: You have [not been sick] __________________________________________________________________ 647 P: [Just a normal] procedure like throwing u:p, vo:mi:ti:ng
__________ _ _ _
file 648 C: >okay shame<
The counsellors separate the different types of information by systematically moving from
the one topic to the next. The counsellors do this by announcing what is to come next.
This resembles what in discourse analysis is referred to as a ‗frame‘, which is setting up
the context within which messages or discussions and what is relevant and what is not are
to be understood (Roberts & Sarangi, 2005). By announcing ‗…let me just get some
information from you‘, the counsellor sets up the frame for a discussion on matters
relating to the woman, her family and their health. Several frames within the information
gathering phase can be distinguished, as can be seen in excerpt 6.05 line 342 where the
counsellor‘s comment, ‗now Johanna your brothers and sisters‘ sets up the frame for
147 Chapter 6 Results I - Overall Description of the Sessions
discussing the woman‘s biological ties, while in excerpt 6.06 line 643 the counsellor‘s
comment ‗now tell me about this pregnancy‘ sets up the frame for a discussion on the
woman‘s current pregnancy.
The sequence of the information-gathering sequence was more uniform than the opening
phase, in that it did not matter whether information was gathered on demographics,
family, medical or pregnancy history. All were characterised by a question or statement
posed to the women in various ways, and them providing answers to these that were
specifically related to the demographic and clinical information. The sequences began
with a request for information from the counsellor and ended when the counsellor had
obtained all the necessary information. The counsellors made use of several question
formats: closed ended questions or, in CA terminology, ‗yes/no interrogatives‘ which
require a yes or a no answer (Schegloff, 2007) as well as open ended questions or, in CA
terminology, ‗wh-interrogatives‘ which refer to questions which contain a who, where,
what and when. Such questions require more than a yes/no answer and, depending on
which ‗wh‘ were used, they require a specific answer for example who requires a
reference to a person (Schegloff, 2007). Examples of yes/no interrogatives can be seen in
excerpt 6.04 line 170, excerpt 6.06 lines 643-644 and examples of wh-interrogatives can
be seen in excerpt 6.4 line 174 and excerpt 6.5 line 342-343. There were also examples of
polarized questions such as those occurring in Session P01 lines 90-91: Couns A ―C:…Is
this your married name or is it your family name? P: my family name.‖. Another request
for information which had a different format was distinguished as a ‗b-event statement‘
(Labov & Fanshel, 1977). These are declarative statements made by one of the
participants of which the other participant has knowledge. Examples include excerpt 6.05
line 345 and excerpt 6.06 line 646.
148 Chapter 6 Results I - Overall Description of the Sessions
The sequence of the information gathering phase can be summarized as consisting of
distinct question/answer formats:
FPP Question (yes/no, wh-type, polarized) by counsellor
SPP Answer by patient
As well as:
FPP Statement (b-event) by counsellor
SPP Answer by patient
The excerpts are self-explanatory in terms of what their function is: obtaining identifying
demographic information for record keeping purposes; asking about the patient‘s family
history and drawing up the family pedigree to establish whether there are any inherited
genetic conditions which might impact on the risks to the current pregnancy; as well as
gathering information about the current pregnancy. All these functions have been
described previously (Armstrong et al., 1998; Babul-Hirji et al., 2010; Butow & Lobb,
2004; Tovell, 2004). This activity resembles medical history taking in physician patient
interactions (Boyd & Heritage, 2006). Even in counselling discourse, specifically HIV
counselling there is an activity which resembles medical history talking (Silverman,
1997). This type of history taking is a fundamental element of the medical encounter as
doctors require information about the patient to make a diagnosis and prescribe treatment.
Genetic counselling interactions are similar to medical encounters in this respect as they
also require information about the patient and her medical history. In addition, genetic
counselling encounters have more emphasis on obtaining information on the biological
relationship and conditions in the family, and this emphasis was observed in the
interactions in the present study.
149 Chapter 6 Results I - Overall Description of the Sessions
Yes/no and open question formats were reported in genetic counselling interactions
(Babul-Hirji et al., 2010; Tovell, 2004) as were polarized questions where the patient was
given two options from which to choose (Babul-Hirji et al., 2010). The sequences of the
genetic counselling interactions is similar to those described in medical history taking
during medical encounters (Boyd & Heritage, 2006) and the question answer sequences
evident in counselling discourse (Silverman, 1997). The similarity is not unexpected as in
any activity where information is requested from one participant by another, the sequence
is expected to take the form of a question and answer format. The resemblance between
genetic counselling interactions, other medical encounters and HIV sessions is not
surprising as in all these encounters medical information is obtained.
As explained in the introduction section of the chapter, non-verbal elements examined in
the study included gazes and body orientation. As the transcripts showed the counsellors‘
gazes were often directed at the files during this phase particularly when they were
recording the information and wrote or drew the family pedigree. When questions were
asked the counsellors mostly looked at the women, but when they were writing or drawing
they mostly looked at the files. Similarly with the women, their gazes were also either
directed at the counsellors or the files.
6.3.3 Information giving sequence
Providing information took up the second largest proportion of time of the genetic
counselling session as seen on the sequence map. During the openings, after the
counsellors attempted to establish what women knew about why they were referred, the
counsellors spent time explaining to the women what they would be discussing in the
150 Chapter 6 Results I - Overall Description of the Sessions
session. It was during the information giving sequence of the session that the concepts that
the counsellors‘ referred to during the opening phase were explained. The women were
given information regarding biological processes, sperm and egg, genetic mechanisms,
normal chromosomes, chromosomal abnormalities associated with advanced maternal age,
risks, invasive testing options, such as amniocentesis, and ultrasound.
There were other instances during the sessions where patient-specific information was
communicated in response to information obtained from the women relating to other
health or genetic issues. These instances were not regarded as being part of the
information-giving phase.
Information-giving was characterised by the counsellors providing information and the
woman acknowledging both verbal and non-verbally that she had heard what was
communicated. Similarly, as seen during the information gathering phase, the counsellors
announced that they would now provide the woman with information. This framing was
characteristic in all the sessions. A typical introduction which illustrates such a frame is
shown in Excerpt 6.07.
Excerpt 6.07: Session P02 Couns B Inexp – Frame
452 C: (0.6) __________________________________________________________________________________ 453 okahhy (.) >alright< so:? Dineo let’s move (.) on to talk more about (1.0)
_ _ _ _ ____________________
files 454 why we’re here today. _____ 455 P: Uhm
_________________________________________ _ _ _ _ _____________________
Desk 456 C: and why we are talking today okay. So what do you know _____________________________________________________________________ 457 about these problems that can happened in a pregnancy ___________________________ 458 when moms are older
151 Chapter 6 Results I - Overall Description of the Sessions
When information was being communicated, large amounts of information were typically
communicated as shown in excerpt 6.08.
Excerpt 6.08: Session P02 Couns B Inexp – Large amount of information
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ____________________
picture 539 C: Okay(.) let me show you a picture? (.) of the chromosomes
_ _ _ _ _
picture 540 P: Ooh
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _______________________________________
picture 541 C: So now >this the when we’re looking inside <one cell (.) of
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ________
picture 542 our body> so if if we took some blood __________________________________________ 543 (.) in our blood we have blood cells ______ 544 P: Uhm __________________________________________________________________ 545 C: in those blood cell we have this genetic information and ________________________________________________________________ 546 what we can do? >is we can take the blood back to the
_____________________________________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture 547 laboratory< we can look under a microscope (.) and we see (.)
_ _ _ _ _ _ _ _ _ _ _ _____ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture picture 548 look inside the cell okay so this is the genetic information (.)
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _____________________________
picture 549 these? are called the chromosomes okay and ________________________________________________________________________ 550 they carry the >genetic information< on them (.) alright I we _____________________________________________________________________________ 551 Count? them all up? altogether we have 46 chromosomes (.) so in _____________________________________________________________________ 552 every cell in our body? we should have 46 chromosomes(.) ___________ 553 P: ((nods))
In excerpt 6.08 above, where the counsellor was explaining the chromosomes, illustrates a
stretch of counsellor talk extending over eight lines. The counsellor had a picture of
chromosomes on the desk and the explanation occurred while both were looking at the
picture. During this time the patient‘s contribution to the conversation consisted of verbal
behaviours such as ‗ooh‘, ‗uhm‘ and a non-verbal head nod (Ten Have, 2007).
152 Chapter 6 Results I - Overall Description of the Sessions
When smaller amounts of information were communicated, the features as shown above
were still present with the exception of the length of the talk by the counsellor. Excerpt
6.09 shows a shorter information-giving sequence.
Excerpt 6.09: Session P02 Couns B Inexp – Shorter information-giving sequence
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _____ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
Picture picture 554 C: okay you’ll see that there are two of each kind so there’re
_____ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture 555 two number 1, two of number 2
_ _ _ _ _ _
picture 556 P: Uhm hu? ______________________ 557 C: all the way through
_ _ _ _
picture 558 P: okay
_ _ _ _ _ ___________________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _____________ _ _ _ _ _ _ _ _ _ _ _ _ _
picture picture picture 559 C: okay one number one(.) comes from mother, one number one comes from
_ _ _ _ _ _ _
picture 560 father (.)
_ _ _ _
picture 561 P: Ooh?
As the two excerpts show, the concepts explained were very complex. The counsellor did
most of the talking while the patient used acknowledgement tokens and head nods to
communicate that she was participating in the interaction and accepting the information
being communicated. The counsellors made use of pictures/graphics to illustrate what they
were discussing and both the counsellor and the woman‘s gaze was often directed at these
pictures when the counsellor was busy explaining. Providing long monologues of
information were reported in other genetic counselling interactions (Babul-Hirji et al.,
2010; Hodgson et al., 2009; Lehtinen & Kääriäinen, 2005; Lehtinen, 2005, 2007), medical
(Gill & Maynard, 2006; Halkowski, 2006) and counselling encounters (Silverman, 1997).
The activity of providing information during genetic counselling encounters therefore
resembles other interactions where information is communicated.
153 Chapter 6 Results I - Overall Description of the Sessions
Another feature of the information sequences included occasional comprehension checks
by the counsellors. The counsellors interrupted their information-giving by checking
whether the woman had questions or whether they understood what was being explained.
Excerpt 6.10 shows such a check. When the patient was invited directly by the
counsellor‘s question in line 586, ‗questions so far?‘, she responded by saying (line 587)
‗No so far I‘m listening‘. In only nine instances the women responded to such invitations.
Excerpt 6.10 Session P02 Couns B Inexp - ‗check‘
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _________________________ picture
584 C: okay and then the >BABY GROWS< from that <very first cell> oka:y? _ _ _ _ _ _ _
picture 585 P: OAlrightO __________________________ 586 C: questions about that. _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture 587 P: No (.) so far I’m STILL liste[ning] _ _ _ _ _ _
picture 587 C: [okay]
These ‗checks‘ seemed to be attempts to ensure that the woman understood what was
being explained. Ensuring patient understanding was found in other genetic counselling
encounters (Lehtinen, 2005). However, Lehtinen showed that understanding was jointly
achieved; it was found that patients produced candidate understandings which were
characterised by a phrase such as ‗so you mean‘ and a repeat or summary of the
information. This was not found in the present study where the women remained mostly
passive. There were, however, a few instances where the women made conversational
contributions without an invitation from the counsellors. In contrast to Lehtinen‘s (2005)
findings of candidate understandings, these were in the form of questions. There were 11
such instances in five sessions; one is illustrated in Excerpt 6.11.
154 Chapter 6 Results I - Overall Description of the Sessions
Excerpt 6.11: Session 11 Couns A Inexp - Initiation
___________________________________________________________________ 1110 C: The baby would (.) they would lose the baby from the test
_ _ _ _ _
file 1111 P: >Uhm< ___________________________ 1112 C: The other ninety-nine?
_ _ _ _ _ _
file 1113 P: >Uhm< ______________________________ 1114 C: no problem (.) will be fine
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1115 P: so how many (2.0) women (.) I’m the first? one you you have told
_ _ _ _ _ _ _ _ _ _ _ _ _
file 1116 me about this or. __________________________________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ 1117 C: We:ll your chance is one out a hundred ninety-nine 1118 P: >Uhm<
Conversational contributions from patients in the form of questions have not explicitly
been reported in genetic counselling interaction studies. In one of the transcripts in Babul-
Hirji et al. (2010), which were used to illustrate the counsellor‘s humanistic voice, the
patient asked a question.
If the sequence of the information-giving phase is considered, three distinct organisations
are evident. For the most part the phase consisted of the counsellor providing information
and the patient responding with acknowledgements i.e. information/acknowledgment
sequences.
FPP explanation/information by counsellor
SPP acknowledgement by patient
155 Chapter 6 Results I - Overall Description of the Sessions
In addition, although less frequently, there was a question by the counsellor, checking
whether the patient understood or whether the patient had any other questions. Here the
sequence was a typical question/answer sequence.
FPP question by counsellor
SPP answer by patient
Further, there was sometimes a question from the patient with the counsellor providing the
answers. This resulted in a sequence organization that resembled the question/answer
formats except that the patient was the asker and the counsellor the answerer. It was a
mirror of the interview formats as found in HIV sessions (Silverman, 1997). The
sequence thus looks as follows:
FPP question by patient
SPP answer by counsellor
6.3.4 Closing sequence
The closing phase signalled that the session was coming to an end and contained several
activities. The closing phase followed on from the information-giving phase and the
counsellors used this phase to ensure that everything that needed to be addressed during
the session was covered. It contained summaries of what was discussed and women were
given an opportunity to ask more questions which were answered. The closings also
contained discussions of which the content was unique to that particular session. The
counsellors also made sure that the women understood what the plan was for her directly
after the session, including her appointments. The women were given the counsellors‘
telephone numbers and were invited to contact them if they had more questions, wanted to
arrange an appointment or if they were concerned about their babies after birth. In those
156 Chapter 6 Results I - Overall Description of the Sessions
sessions where the woman agreed to an amniocentesis, a consent form was completed.
The counsellors made notes in the patient files and thank you and goodbyes were said.
This phase was characterized by marked variation in length and the closing of the session
was (mostly) signalled by the counsellor asking a question such as ‗anything else‘ or ‗do
you have any more questions for me?‘. Other ways in which the counsellors initiated the
closing phase was a reference to the plan after the session such as ‗so you want to go
back‘ and ‗alright so I will try and organise..‘. Other ways included ‗let‘s do the consent‘,
or ‗how do you feel about what we‘ve discussed‘, or ‗so what I understand from you....‘.
Excerpt 6.12 illustrates the signalling of the closing stage of the session.
Excerpt 6.12: Session 05 Couns B Inexp – Closing stage
________________ 1205 C: Ooka::yO? (2.0) _____________________________________________________________________ 1206 >Thembi is there anything else you want ask me now.<(2.0) _________________ 1207 P: Ountil now noO ___________ 1208 C: its oka::y _________ 1209 P: OuhmO ___________________________________________________________ 1210 C: all right so let’s go and you have to talk to Thandi
This excerpt shows how the counsellor moved into the closing stage of the session by
using the transition marker ‗okay‘. The counsellor then asked the woman whether there
was anything else she wanted to know.
Excerpt 6.13 shows the counsellor providing the woman with more information. As with
the information-gathering and information-giving phase, several frames exist within the
closing phase. In the example below the counsellor announces that she is going to give
157 Chapter 6 Results I - Overall Description of the Sessions
the woman her card and thereby give her contact information should the patient need to
speak to her again.
Excerpt 6.13: Session 10 Couns C Inexp – More information
________________________________________ 1624 C: >okay I want to give you my card.< ____ 1625 P: yes ________________________________________________________________________ 1626 C: this is so that you can phone me (.) if there is [any problems?] ______________________________ 1627 P: [if there’s any] problems _____________________________________ 1628 C: If you think of more que:stio:ns? ____________________ 1629 P: yes [I can phone] ____________________ 1630 C: [you can phone.] _____ 1631 P: yes
Another activity was also seen in closings as shown in excerpt 6.14.
Excerpt 6.14: Session 10 Couns C Inexp – Patient and her partner‘s discussion
___________________________________________________________________ 1514 P: then he said okay? Carry? on go? you’ll >tell me when you ___________________________________________________________________________ 1515 come back how you <fou::nd> it and all that I said OokayO let me ___________________________________ 1516 the problem is I want to know __________ 1517 C: [ri::ght] _________________________________ 1518 P: [I] want MORE knowledge _________________ 1519 C: to understa::nd.
Excerpt 6.14 shows that the woman shared information with the counsellor regarding
discussion with her partner about attending the clinic.
The sequence of the closing phase consisted of many different types. As the excerpts
illustrated, there were questions by the counsellors/answers by the women sequences such
as excerpt 6.12 line 1206
158 Chapter 6 Results I - Overall Description of the Sessions
FPP question by the counsellor
SPP answer by the patient
The counsellors often explained or provided more information, for example about
contacting the counsellor after the session and so there were
information/acknowledgement sequences shown as in excerpt 6.13 line 1624-1628
FPP information by the counsellor
SPP acknowledgment by the patient
The women also made conversational contributions and there were
information/acknowledgement sequences as shown in excerpt 6.14 line 1514-1516:
FPP information by the patient
SPP acknowledgment by the counsellor
Very few studies have examined session closings and those that have, do not provide
details. The activities during the closings in the present study were found to be similar to
those described in one other genetic counselling interaction (Hodgson et al., 2009) and in
primary care consultations (West, 2006) in which summarizing, making arrangements,
announcing closure, farewells and inviting questions were described. There was no
reference made to women making conversational contributions during closings in these
studies. Women‘s conversational contributions were regarded as counselling segments
and these are examined in more detail in chapter 9. It was also noted that, unlike the
information-gathering and giving sequences the counsellors‘ and the women‘s gazes were
almost exclusively directed at each other throughout the closings.
159 Chapter 6 Results I - Overall Description of the Sessions
6.3.5 Decision-making sequence
The decision-making sequence of the session is defined as the stage at which the
counsellors engage with the women regarding the decision about whether or not to have
an amniocentesis. During these decision-making sequences, the counsellors engaged with
the women regarding amniocentesis, ultrasound, and the possible outcomes. This
sequence was flexible and was found to occur after either some of the information or all of
the information had been discussed. The length of the sequences varied between the
counsellors and the sessions.
Decision-making sequences were characterized by questions posed to the women to which
they provided information rather than just yes or no responses. The women typically
came to a decision after the counsellor had asked several questions. As a result, the
decision-making sequences consisted of several cycles. The cycles began with a question
from the counsellors focussing on the women‘s thoughts regarding the information.
Excerpt 6.15 illustrates an initiation of the decision-making sequence wherein the
counsellor asks the woman what she thought about the amniocentesis. The excerpt starts at
the point where the counsellor had completed explaining the amniocentesis test. The
counsellor then invites the patient to share her thoughts about the information just
explained (the test) by the use of a wh-type interrogative. The question is designed as a
perspective-display series (PDS), which invites the woman to talk about her thoughts, or
attitude rather than just providing a yes or no answer. The woman responded by sharing
that she is scared of doing the test.
160 Chapter 6 Results I - Overall Description of the Sessions
Excerpt 6.15: Session 1 Couns C Inexp – How does this test sound to you?
_______________________________________ 1199 C: how? does this test sound to you.
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture 1200 P: Eish (.) I am scared of this test really
_ _ _ _ _ _
picture 1201 (2.0)
_ _ _ _ _ _ _
picture 1202 yo? (1.0)
_ _ _ _ _ _ _ ____________________________ _ _ _ _ _ _ _ ______________
picture picture 1203 C: it does it look scary. - what, what scares you about this?
The counsellors in turn dealt with the women‘s answers in different ways as illustrated in
excerpt 6.16. One way in which the counsellors responded was to provide the woman with
more information specifically to clarify misunderstandings or to provide the information
needed for her to come to a decision. Excerpt 6.16 shows information being
communicated during the decision-making phase. Here the patient‘s comment ‗this
needle‘, in line 1250, is met with an explanation of the technical aspects of the
amniocentesis procedure.
Excerpt 6.16: Session 1 Couns C Inexp – Information being communicated
______________________ 1205 C: what do you mean? _______________ 1206 P: This needle,
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ___________________________________
down 1207 C: The needle doesn’t touch, the baby. >what they do is you?< _____________________ 1208 Know? the sonar? ___ 1209 P: Ja
_ _ _ _ _ _ _ _______________
down 1210 C: They look on the sonar _____ 1211 P: O::h _________________ 1212 C: as they doing it ___ 1213 P: Ja
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ______ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture picture 1214 C: so it >doesn’t go anywhere< near baby it just goes into the water 1215 (3.0)
161 Chapter 6 Results I - Overall Description of the Sessions
During the decision-making sequences the women also made conversational contributions.
As seen in excerpt 6.17 a woman responded to the counsellor‘s explanation (shown in the
previous excerpt 6.16) by volunteering and sharing her thoughts and feelings and
subsequently her decision.
Excerpt 6.17 Session 1 Couns C Inexp – How does this test sound to you?
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture 1216 P: I am scared of this I really scared I rather, (.) be a
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _____________
picture 1217 Surpri::se I don’t want to know because it’s going to worry me _________________________ 1218 C: It’s gonna worry you ______ 1219 P: A::hh _______ 1220 C: Okay
In genetic counselling sessions, talking about the decision to be made, was shown to occur
at different stages during the session and usually happened during and/or after information
was given (Hodgson et al., 2009). It was also found that PDS was used in the form of
reflective frames to assist patients to think about their feelings and to allow them to reflect
on their experiences (Sarangi et al., 2004).
In medical encounters, decision-making as seen in genetic counselling does not seem to
feature (Stivers, 2006). Patients consult medical practitioners for their medical condition
and expect treatment (Stivers, 2006). The treatment decision is mostly the doctor‘s
responsibility. In medical encounters, patients do not always accept the doctor‘s treatment
decision and as a result, other interactional processes were shown to be present with
regard to how the two parties dealt with this dilemma (Stivers, 2006). In HIV counselling,
decision-making also does not seem to feature and, in these encounters, advice giving
from the counsellors seemed a prominent activity (Silverman, 1997).
162 Chapter 6 Results I - Overall Description of the Sessions
The decision-making phase had several different sequences. There were question/answer
sequences, as seen in excerpt 6.15, where the counsellor asks what the woman thinks
about the test. The questions/answer sequences were specific in that the woman shared
information (PDS (Maynard, 1991) or initiating a reflective frame (Sarangi et al., 2004)).
The sequence is therefore:
FPP Question by counsellor
SPP Answer by patient
Whereas in excerpt 6.16 the counsellor provided the patient with more information
regarding the needle and here the sequence was an explanation/acknowledgement:
FPP explanation by counsellor
SPP acknowledgement by patient
There was also another type of sequence where the woman‘s talk was predominated by
sharing or asking a question and the counsellor answering or acknowledging. This
resulted in a mirror of the information delivery formats as seen in HIV sessions
(Silverman, 1997). The sequence in these instances was as follows:
FPP Information by patient
SPP Acknowledgement by counsellor
Coming to a decision regarding having an amniocentesis performed or not was central to
these sessions. This was the goal of the interactions and the counsellors stated during the
openings that the woman would be given information about a test and that she would be
required to make a decision regarding whether or not she wanted this performed. The
163 Chapter 6 Results I - Overall Description of the Sessions
brief overall description in the above sections does not capture the complexity of the
process of how the woman came to a decision. With regard to non-verbal behaviour, the
counsellors mostly directed their gaze at the women, but both the counsellors and the
women also direct their gaze at the files or pictures during parts of the discussions.
6.3.6 Counselling segments
In contrast to the other phases observed, counselling segments occurred throughout the
session. The content or turn length of the segments varied considerably. The segments
were characterized by the women sharing information and as a result, the sequences
consisted of more talk from the women than the counsellors. The counsellors‘ responses
consisted of minimal encouragers, paraphrasing, mirroring and questioning.
The topics discussed during these segments, in contrast to the rest of the session, included
aspects of the women‘s life, such as personal experiences, beliefs, concerns and feelings.
They did not include the genetic and medical aspects of being at an increased risk for fetal
chromosome abnormalities due to maternal age. The focus of these segments was issues
of interest to the woman and they did not always function to promote empathy. As a
result, and in keeping with Kessler‘s terminology the word counselling was the preferred
term (Kessler, 1997a). Kessler explained the counselling model as a process whereby the
counsellors addressed the patient‘s fears, hopes and defences etc. These counselling
segments therefore were concerned with the psychosocial aspects of genetic counselling.
The focus of this section is to show one such a segment to illustrate its content and
sequence (excerpt 6.18).
164 Chapter 6 Results I - Overall Description of the Sessions
Excerpt 6.18: Session 10 Couns C Inexp – Empathic segment
_______________________________________________
289 P: [it was very] very very difficult for me to:
_____________________________________________________________
290
accept it like (.) even >after like I (get birth) it was ectopic
__________________________________________________________________
291
and operation< (.) it was hurting? inside like I did it purposely
___________________________________________________________________________
292
you see (.) but I know? that I didn’t do it maybe God (.) (( cries))
_______________________________________________________________________________
293
saw that (.) I couldn’t (.) go through with that pain you see (( cries ))
______________________________________________________________________
294 C: uhm (.) so it was for you it was a really ha:rd emotional ti:me
___________________________
295 P: Oit was emotional timeO
_______________________________________________________
296 C: and I can see it still upsets you?
________________________________________
297 P: it’s still(.) it’s Ostill upsets me a lotO
______________________________________________________
298 C: what was the ha:rdest part of that time for you?
__________________
299 P: to lose the baby.
_____________________
300 C: O to lose the babyO
________________________________________________________________________________________________________________________________
301 P: because (.) after? I found out that I was (.) pregnant >I learned to as< (.)
_____________________________________________________________
302
accept it because I didn’t want a baby< (.) you see (.)
______
303 C: right
__________________________________________________________________
304 P: so I learned to a accept it when I learned? to accept it then
___________________________________________________
305
that’s happened it was very (.) hurtful for me
The patient‘s talk is in response to the counsellor‘s question ‗how was that time for you?‘.
In contrast to the rest of the phases, the woman shares a large amount of information. The
counsellor uses her turn to acknowledge what the woman is saying and encouraged her to
talk more with the use of counselling skills (Egan, 2001; Veach et al., 2003) such as
paraphrasing (line 294), statements (296), questions (line 298), mirroring (line 300) and
minimal encouragers (line 303). Throughout the exchange, both the counsellor and the
woman looked at each other.
165 Chapter 6 Results I - Overall Description of the Sessions
In genetic counselling studies, this type of interaction has been found, but it is not referred
to as a counselling segment per se. It has in some cases been referred to in terms of voices,
such as the ‗humanistic voice‘, because the patients do more talking and the counsellor
listens and responds with minimal response tokens (Babul-Hirji et al., 2010). Others have
looked at whether and how often counsellors addressed emotional aspects (Butow &
Lobb, 2004; Duric et al., 2003; Ellington et al., 2005; Ellington et al., 2006). As seen in
HIV counselling sessions, in the counselling segments in this study, the counsellors were
found to encourage the women‘s narrative (Miller & Silverman, 1995; Silverman, 1997).
The sequence of the counselling segments was characterized by more talk from the
women. Such conversational contributions from the patient resemble a mirror of the
information delivery formats as defined by Silverman (1997). The counsellors however,
do not only respond by encouragers, but use several techniques such as paraphrasing and
mirroring what the woman had said. The sequence was as follows:
FPP Information by patient
SPP Acknowledgement/response by counsellor
The extent of ‗counselling‘ in genetic counselling has been questioned and how much, and
if, counsellors use the counselling model has been queried (Butow & Lobb, 2004; Roter et
al., 2006b). As counselling sequences were found to occur in these sessions and because
there were questions regarding how genetic counsellors addressed the psychosocial
aspects, further analysis of the counselling segments were warranted. This detailed
analysis can be found in chapter 9.
166 Chapter 6 Results I - Overall Description of the Sessions
6.4 Discussion
6.4.1 Thematic mapping
The process of sequence mapping (Sheon et al., 2010) allowed the 17 prenatal genetic
counselling sessions to be characterized in terms of functional units and different
discourse features. This approach resulted in six components being differentiated: an
opening, information gathering, information-giving and closing phase, a decision-making
sequence and counselling segments. Research on genetic counselling encounters has
confirmed similar structures (Armstrong et al., 1998; Babul-Hirji et al., 2010; Butow &
Lobb, 2004; Hodgson et al., 2009). Although the various studies described the
components slightly differently, from the results of the present study there is clear overlap.
The components identified in the current study can be aligned with the definition of
genetic counselling (Resta et al., 2006): The information gathering phase aligns with
‗interpretation of family and medical histories‘; the information giving phase aligns with
‗education about inheritance, testing, management, prevention, resources and research‘;
and decision-making and counselling segments align with ‗counselling to promote
informed choices and adaptation‘. The overall mapping therefore provided some evidence
for how the goals as set out in the definition of genetic counselling, are realised in
practice.
The mapping further allowed the different phases to be characterised by specific discourse
types. A discourse type is a way of characterizing forms of talk, for example, medical
history taking or troubles telling (Sarangi, 2000). The discourse types were described in
terms of their sequence (Schegloff, 2007) and it was found that the sequence was different
167 Chapter 6 Results I - Overall Description of the Sessions
depending on the phase of the session. Different sequences occurred: question/answer; and
information/acknowledgement sequences, where the counsellors asked the questions and
provided the information. Similar sequences occurred, but where the roles were reversed
and the women made conversational contributions and asked the questions, while the
counsellors provided the information. What was shown was that the information
gathering sequence consisted of a question by the counsellor and answer by the woman.
In contrast, information giving was characterized by information provided by the
counsellor and acknowledgment by the woman consistent with other research in genetic
counselling (Babul-Hirji et al., 2010; Lehtinen & Kääriäinen, 2005; Lehtinen, 2005).
Such sequences have also been described in medical (Halkowski, 2006; Mishler, 1984;
Robinson, 1998) and other counselling (Silverman, 1997) interactions. Openings, closings
and decision-making sequences consisted of both question-answer and information
giving/acknowledging sequences, while the main discourse type in counselling segments
were conversational contributions by the women, in that they provided the information
and had acknowledgment from the counsellors. In terms of non-verbal features,
differences were evident when examining the different phases. Although it was found that
the counsellors and the women mostly directed their posture and gaze towards each other,
their gaze were often directed at the patient files during information gathering and towards
the pictures/graphics during information giving sequences, while their gaze was almost
exclusively directed at each other during decision-making sequences and counselling
segments.
The different phases or components of the session can be said to represent activity types
while at an interactional level they show various discourse types. An activity type is
regarded as characterising a setting such as a medical consultation or a university seminar
168 Chapter 6 Results I - Overall Description of the Sessions
and a discourse type on the other hand is regarded as a way of charactering the form of
talk such as medical history taking or troubles telling (Sarangi, 2000). The overlap
between activity types and discourse types results in interactional hybridity. Within this
framework, analysts are able to identity sections of activity types or discourse types for
further analysis. However, as revealed by the overall description of the sessions in the
present study, an analysis of a specific section does not represent the entire interaction and
conclusions should not be drawn in isolation.
6.4.2 Ordered structure
The highly controlled structure was a very strong feature of the sessions in the present
study and seems to be unique when compared with existing literature on genetic
counselling. Except for openings and closings, when (or if) other components occurred
during a genetic counselling session they were reported to be less rigid and interspersed
(Armstrong et al., 1998; Babul-Hirji et al., 2010; Hodgson et al., 2009). For example,
Hodgson et al. (2009) who studied genetic counselling sessions with women at an
increased risk of having fetal abnormalities due to a screening test, found the screening
test, diagnostic testing dialogue, and explanation of the conditions being tested for to be
interspersed. Similarly Babul-Hirji et al. (2010), who studied genetic counselling sessions
where a new diagnosis was communicated to parents found interspersed explanations. In
cancer sessions, less structure was observed when the patients engaged with the genetic
information (Armstrong et al., 1998). In contrast, analysis of a single antenatal genetic
counselling session in South Africa, showed the session as comprising an introduction
(reason for referral and ‗what is going to happen‘), family history, patient counselling and
education, decision-making and referral, procedure and/or follow-up arrangements, which
also revealed a tightly controlled agenda (Tovell, 2004).
169 Chapter 6 Results I - Overall Description of the Sessions
Although an ‗order of business‘ is necessary, as this is what distinguishes institutional talk
from informal interactions (Heritage & Maynard, 2006), such a highly structured agenda
was not seen in other interactions. The tightly controlled agenda found in the present study
was evident not only in the strict order of the different components, but also in some of the
techniques used by the counsellors, such as framing. The structure seems to serve a
specific purpose in these sessions in that the counsellors use it as a way of guiding the
woman through the genetic counselling process. This practice may be linked to the fact
that all the women were referred to the clinic, resulting in the counsellors assuming that
they were unfamiliar with the service.
6.4.3 Agency
The genetic counsellors had control over initiating the phases of the sessions as they were
the first speakers. The counsellors therefore steered the interaction and chose which topic
to initiate, how many questions to ask, before accepting the answer, and when to move to
another topic. In addition, the women‘s voices hardly seemed to be heard. When the
counsellors invited questions, the women in the majority of cases did not answer, and they
made very few conversational contributions.
Such features in interactions have been reported as representing the ‗Voice of Medicine‘
(Mishler 1984). This voice of medicine results in power asymmetry in that the doctor
holds the power while the patient has little agency. There is debate relating to whether the
power asymmetry is interactionally grounded rather than created (Pilnick & Dingwall,
2011).
170 Chapter 6 Results I - Overall Description of the Sessions
In this context, it is argued that the power asymmetry is more than interactionally
grounded. As both parties adhered to the structure, it seemed to flow without any
disturbance. Even when the counsellors provided the women with interactional space by
inviting decisions, they generally did not take these opportunities. The women usually
remained passive and there were only 20 instances when they responded by initiating a
question when given the opportunity. A major consideration was the fact that these
women did not request the service but were referred in terms of hospital protocol. This
power asymmetry might be linked to the socioeconomic groups to which these women
belonged and their general lack of experience with participation in making health care
decisions.
6.4.4 Phases for further analysis
The preliminary analysis as shown above provided a description of the overall sessions.
During this process, three components were found to be particularly interesting: the
opening, decision-making and counselling segments. A decision was taken to analyse the
data further based on the phases identified. Further analysis could have been directed by
other phenomena such as communicating information or risk communication. Using the
phases as a starting point for analysis, risked producing an analysis that may be too
restrictive as it may be forced to keep within the structures identified. The analysis
however developed in this way as the researcher wanted to investigate what the
interactions looked like rather than examining specific phenomena identified in other
research.
171 Chapter 6 Results I - Overall Description of the Sessions
The opening phase was thought to be particularly interesting as the reason for the
interaction was established and it set the tone for the rest of the session. The way in which
the women and the counsellors oriented towards a particular agenda was revealed. In the
openings, it was clear that the women did not request the consult but that they had been
referred. As a result, further analysis of the opening phase seemed worthwhile and these
findings are discussed in chapter 7.
Decision-making was a pivotal activity in the sessions as the women needed to decide
whether or not they wanted an amniocentesis performed. Therefore, the decision-making
sequences, which revealed the ways in which the women moved towards making a
decision, were analysed further and this is discussed in chapter 8.
The counselling segments were in contrast to the rest of the session as the women made
some significant conversational contributions. As a result the counselling segments, in
which the women discussed their fears, concerns and experiences, was worthy of further
attention and this analysis is discussed in chapter 9.
6.5 Summary
This chapter described the overall structure of the 17 sessions and illustrated the strict
order in which the components occurred, with openings followed by information-
gathering, information-giving and a closing. Two other phases, decision-making and
counselling appeared to be less organised with decision-making sequences occurring
during or after information giving, and counselling segments appearing at any stage in the
session. It was possible to identify each phase by the function it had during the session
172 Chapter 6 Results I - Overall Description of the Sessions
and within this framework, it was possible to examine the sequence organization. The
non-verbal features were described in terms of an overall impression and showed that the
participants gaze was mostly directed at each other or the files or pictures on the desk or
the lap of the counsellors. This revealed the hybrid nature of genetic counselling sessions
as an activity type. The rigid structure is suggested to have been deployed to assist the
counsellors to complete the session and the researcher suggests that this is a unique feature
associated with the context and setting of the study and the institutional discourse.
Finally, the three phases that were selected for further analysis were outlined.
173 Chapter 7 Results II - Analysis of the Opening Phase
7 Chapter 7 Results II - Analysis of the Opening Phase
The preliminary analysis of the opening phase revealed several features, which suggested
the need for further analysis. In particular, how the counsellors established why the
women were referred required further analysis. Further examination of the openings
revealed more structures within the opening phase and this chapter begins by describing
these elements followed by an analysis and discussion of the interactional features of the
openings.
7.1 The overall structure of the opening phase
As shown in the previous chapter, the opening phase was the beginning of the genetic
counselling session and took on average 2 min 38 seconds, ranging from 1 min 42 sec to 3
min 43 sec. The elements contained in the opening phase included:
▪ an introduction sequence,
▪ a greeting sequence,
▪ reference made to the current research project,
▪ setting an agenda,
▪ an explanation of the reason for referral,
▪ an explanation of what to expect in the session,
▪ an invitation to ask questions, and
▪ an offer of observation
174 Chapter 7 Results II - Analysis of the Opening Phase
Table 7.1. Summary of the sequences in the opening phase
Opening sequences
SESSIONS
P01
01:42
CnsA
P02
02:11
CnsB
P03
02:12
CnsB
01
01:34
CnsC
02
03:43
CnsA
05
02:17
CnsB
06
01:45
CnsA
07
01:35
CnsC
08
02:32
Cns F
09
02:04
CnsD
10
01:54
CnsC
11
02:15
CnsA
12
01:42
CnsD
13
02:59
CnsE
14
01:52
CnsE
15
02:11
CnsE
16
03:33
Cns F
Introduction sequence N Y N Y Y Y Y Y Y N Y Y N Y Y Y Y
Greeting sequence N N N N N N N Y Y N Y N N N N N Y
Reference to research N Y N Y Y N N N N Y Y N Y Y N N N
Inviting questions Y Y Y N Y Y N N Y N N N Y N N Y Y
Offer observation N N N N N N N N N N N N N N N Y N
Setting agenda Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y
Explanation of reason
for referral Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y
Explanation of what to
expect in session Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y Y
Y – Yes
N – No
175 Chapter 7 Results II - Analysis of the Opening Phase
There were some differences between the sessions regarding the occurrence of some of the
elements and not all were included in all sessions. The introduction sequence, greeting
sequence, reference to the research, invitation to questions and offers of observation did
not occur in all sessions, while an attempt to set an agenda and an explanation of what to
expect from the session occurred in all the sessions with very little variation between
them. Table 7.1 is a summary of which elements of the opening sequence appeared in
each of the sessions, how the length of the phase and who the counsellor was.
As discussed in the previous chapter, the openings of the genetic counselling session in the
current research were found to be very similar to the openings of medical encounters
(Byrne & Long, 1976; Heath, 1981, 1986; Robinson & Heritage, 2005; Robinson, 2006;
Robinson, 1998) and other genetic counselling encounters (Armstrong et al., 1998; Babul-
Hirji et al., 2010; Butow & Lobb, 2004; Hodgson et al., 2009). Further examination of the
structure of the openings and the distinct elements that this revealed, allowed more in-
depth comparison with medical encounters. In these encounters, the openings have been
divided into the ‗preliminaries‘ and ‗soliciting presenting concerns‘ (Heath, 1981, 1986).
In the genetic counselling interactions in the present research, the introductions, greetings
and reference to the current research project were aligned with the ‗preliminaries‘. The
preliminaries consisted of an introduction sequence, a greeting sequence and a reference to
the current research project. An introduction sequence occurred in 13 of the 17 sessions.
In the four sessions where there was no introduction sequence, it was very likely that this
took place before the recording of the session started. A greeting sequence only occurred
in four of the 17 sessions. This ―how are you‖ typically involved the counsellor asking the
woman how she was with the woman replying. A greeting in these genetic counselling
176 Chapter 7 Results II - Analysis of the Opening Phase
sessions is thought to function as a way to establish rapport, rather than an attempt to
solicit a concern. The counsellors referred to the current research project in seven of the
sessions. Introducing the research into the session, may indicate that the counsellors were
conscious of aspects that might have influenced the session and actively attempted to
address these. The preliminaries therefore allowed the counsellors and the women to
establish co-presence (Hodgson et al., 2009; Robinson, 1998) as they covered
introductions and greetings, and talked about the current research project. This initial
interaction also assisted the participants in building a relationship (Byrne & Long, 1976;
Hodgson et al., 2009).
The structure of the genetic counselling session opening, based on its contents, is
illustrated in figure 7.1
Preliminaries
(introduction; greeting; reference to current research)
Setting agenda
(reason for referral; explanation of reason for referral; explanation
of what to expect in the session)
Encouraging participation
(inviting questions; offering observations)
Figure 7.1. Diagram of the structure of the opening phase.
177 Chapter 7 Results II - Analysis of the Opening Phase
Setting of an agenda, explanations of the reason for referral, and what to expect from the
session align with ‗soliciting presenting concerns‘. This is where the counsellors establish
the reason for the referral and explain what to expect from the session. In addition, in
medical encounters it was found that patients were encouraged to keep talking by the
doctor offering observation and by the use of silence (Byrne & Long, 1976). Similarly, in
the current research, the women were encouraged to ask questions and the counsellors
offered observations.
7.2 Setting an agenda
Setting an agenda for the genetic counselling session was an explicit and deliberate
process occurring in all 17 sessions. Setting the agenda involved: the counsellors asking
the women why they were there, the women‘s responses, the counsellors‘ explanations of
the reason for the referral and expectations for the session.
From a content perspective, the opening questions from the counsellors could be divided
into four groups: 1) ‗did the doctor explain to you‘ (six sessions); 2) ‗do you know
why….‘ (six sessions); 3) ‗what did the doctors tell you‘ (three sessions) and 4) ‗other‘
(two sessions). The women responded to the counsellors‘ opening questions regarding
their referral either by saying: ‗it is because of age‘ (11 sessions); that she did not know (5
sessions); or she gave another reason (2 sessions). In all cases, the counsellors responded
to the women‘s answers, regarding why they were there, by referring to advanced
maternal age as the reason for the referral. When the women said it was ‗because of age’,
the counsellors confirmed that this was correct. When the women did not know why they
were referred, the counsellor, in some cases, explored further by enquiring how the
178 Chapter 7 Results II - Analysis of the Opening Phase
woman was referred (the sequence of events and details of who referred and when) before
ultimately explaining the reason for the referral. In two sessions in which the women gave
other reasons for referral, the counsellor stated that it was advanced maternal age.
There was little variation between the sessions regarding the counsellors‘ explanation of
advanced maternal age and included the following details: advanced maternal age being
35 years and older, increased risk for abnormalities, the availability of testing, the
gestational age at which testing is performed, the woman has a choice, the associated
problems, and the associated risk. The explanation of what to expect in the session were
either a statement such as: ‗I just want to get your details‘, or a discussion of what to
expect step by step. The explanation outlined most of the agenda items: obtaining
personal details, obtaining information regarding the woman‘s family and medical history,
drawing a pedigree, and providing information on chromosome abnormalities, risks and
available testing.
In examining the openings more closely a key feature of the opening phase was that
setting an agenda did not necessarily allow the women‘s concerns to emerge. In medical
encounters where doctors elicit patients‘ presenting concerns (Byrne and Long 1976;
Heath 1981; Robinson 2006), different question formats were found to elicit different
types of information (Robinson, 2006). What medical practitioners did however, was ask
the patients why they were there and how they could be helped. The question formats
used by the genetic counsellors, in the present study, elicited from the women what they
were told about their age as being the reason for the referral. The format did not allow the
woman to talk about what they thought about their age that resulted in referral. The
women answered as to whether they knew why they were referred and not as to what they
179 Chapter 7 Results II - Analysis of the Opening Phase
were concerned about. The women‘s answers therefore provided counsellors with
information regarding who referred them, how they were referred and what they were told
about the referral.
The way in which the counsellors framed their questions showed that they knew that the
women attended the sessions because they had been referred, from a medical professional,
generally a doctor, and that they should have been given information about the necessity
for referral. The way in which the questions were asked provided the women with a frame
in which they could provide answers such as in excerpt 7.01, where the counsellor frames
that she is now going to ask the woman a question (line 8).
Excerpt 7.01: Session 01, Couns C Inexp – Do you know why they‘ve referred you?
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _______________ file
8 I just want to ask do you know why they’ve _______________________________ 9 referred you to us today. (.) ___________ 10 P: no. (1.0) ___________________________________________ 11 C: did they mention anything to you (.) _______________________________________________ 12 P: no nothing, I don’t even know about this _______________________________________ 13 genetic counsellor, [I don’t know] ________ 14 C: [okay] ___________________ 15 P: what it is about, __________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 16 C: Okay so the doctors saw you? On, (.) the (.) ((date)) _______ 17 P: [yes:] ________________________ 18 C: and they did a sonar _____ 19 P: yes? _________________________________________________________________________ 20 C: and then (.) they send you must come to genetics but they didn’t ____________________ 21 explain why. (1.0) ____________________ 22 P: no. [Othey didn’tO] _____ 23 C: [okay]
180 Chapter 7 Results II - Analysis of the Opening Phase
The excerpt shows that the counsellor‘s question is designed in such a way that it provided
the woman with an opportunity to answer in relation to her knowledge regarding the
referral. The woman‘s response (line 10) shows that she orientates to the question being
about whether she knows why she was referred. Her ‗no‘ reply indicated that she did not
know the reason for referral. The counsellor pursues this further by asking ‗did they
mention anything to you‘ (line 11). Even when the counsellor attempted again in line 11
by putting the emphasis on the word ‗mention‘, the focus was on whether or not the
woman was given relevant information. The woman‘s response (line 12) suggests that she
also orientated towards the information that should have been conveyed when she replied
she didn‘t ‗even know about this genetic counsellor‘. The emphasis on the word ‗know‘
suggests that information was not conveyed. Further, in the counsellor‘s b-event
statement (lines 20-21) she again placed emphasis on the fact that the woman did not get
an explanation of why she was referred when she said ‗they didn‘t explain why‘. The
emphasis on the ‗why‘ illustrates that the reason is important and that the counsellor
expected the woman to have been given some relevant information.
The excerpt illustrates the emphasis on eliciting what the woman knew about the referral.
The excerpt also illustrates that the counsellor knows that the referral is from a doctor as
shown in lines 8 (they‘ve) and 11 (they) when she started off referring to ‗them‘ and then
clarified in lines 16 (the doctors) that by ‗they‘ she meant the doctors. Further evidence
can be seen in excerpt 7.02 where similar features were present.
181 Chapter 7 Results II - Analysis of the Opening Phase
Excerpt 7.02: Session P01, Couns A Inexp – You weren‘t too sure
_______________________________________________ 1 C: Alright so (name) said to me, (.) that you ________________________________________________ 2 weren’t too? sure about why the doctors ___________________________________________ 3 wanted you to come to see us today. ____ 4 P: Yes. _____ 5 C: okay, _____ 6 P: yes. ____________________________________ 7 C: Did they say anything to you? ____ 8 P: No ___________________________________________________ 9 C: No? so you’re a bit (.) confused? about why _____________________________ 10 you’re coming to see us? ___ 11 P: Yes ________________________ 12 C: Are you worried? (.) ______________________ 13 P: Yes? I’m worried? ____________________________________________________ 14 C: because you didn’t know why they say, they _______________________ 15 said go to genetics, ______ 16 P: uh hu ______ 17 C: okay, ____ 18 P: Yes ____________________________________________________________ 19 C: So Mary the reason the doctors wanted you to come
In the counsellor‘s b-event statement (line 1-3), she placed emphasis on what the woman
knew about the reason why the doctor wanted her to be referred. The woman‘s response
(line 4) confirmed that she orientated to the statement concerning her uncertainty as to
why she was referred being a question which required and answer when she replied with a
‗yes‘. The counsellor‘s frame of eliciting what the woman was told about the referral is
further evident in lines 9-11. She used a b-event statement and the intonation of the word
‗confused‘ to ascertain how the woman felt about the fact that she did not know why she
had been referred. The counsellor attempted to probe further by asking whether this was
182 Chapter 7 Results II - Analysis of the Opening Phase
causing the woman concern (line 13) and when the woman confirmed that she was
worried, the counsellor in her response, linked this to the fact that she was not told why
she was referred. This excerpt also showed that the referral was from a doctor when the
counsellor explicitly referred to ‗the doctors‘ in lines 2 and 19.
The excerpts showed how the counsellors formulated their questions in specific ways
which provided the women with a narrow scope of producing her concerns. This limited
the women to provide information relating to what she knows about her referral rather
than allowing her to express and share (if any) other concerns. It would seem that the
counsellors‘ aims during this questioning is primarily to gain information regarding the
women‘s knowledge of AMA as increasing her risk of having a child with abnormalities,
thereby preparing the ground to provide the women with the relevant information.
Evidence for this orientation to the opening question being asked in the service of
gathering information rather than exploring the women‘s concerns, is supported by the
way in which the counsellors respond to the women‘s answers.
Irrespective of the women‘s answers regarding their reason for the referral, the counsellors
informed them that they were referred for a discussion of maternal age. Whether the
women knew, did not know or gave another reason (two sessions), the counsellors‘
responses to the women were uniform. They accepted the women‘s answers when they
referred to maternal age as being the reason for their referral. When a woman did not
know, or she gave another reason, the counsellor introduced maternal age as the reason for
the session. The counsellors made it clear that the reason for the genetic counselling
sessions was advanced maternal age, as shown in excerpt 7.03.
183 Chapter 7 Results II - Analysis of the Opening Phase
Excerpt 7.03: Couns A Inexp, Session 02 – Referred for age
_____________________________________________________________________________ 15 C: Okay ((nods)) did the doctors? explain? to you why you must come ________________________________________________ 16 and talk to us today? (.) did they say why? _________________________________________________________________ 17 P: they say sometimes it happen I have an abnormal baby. _________________________________________ 18 C: okay? (.) and did they say why?(0.2) _______ 19 P: >age< ______________________________________________________________________________ 20 C: the >age< okay (.) so that’s right (.) so the reason that you come they ___________________________________________________________________________ 21 wanted you to talk to us today is because of your age>you’re 36? _______ 22 now< ______________ 23 P: Um ((nods))
In excerpt 7.03, the patient in her response, confirmed that she was told that she could
have an abnormal baby (line 17) and that this was because of her age (line 20). The
counsellor accepted the woman‘s answer when she repeats ‗the age‘ and followed-up with
an explicit statement ‗that‘s right‘ also placing emphasis on the word ‗right‘, indicating
that maternal age was correct. There is an evaluative nature in the counsellor‘s response
which supports the argument that the opening questions are produced as way of gaining
information as to what the women‘s current knowledge are so that the counsellor can then
start the discussion about maternal age.
When a woman did not know why she was referred the counsellor informed her that the
reason was advanced maternal age. This is shown in excerpt 7.04 below. In response to
the woman saying that she did know about this ―genetic counsellor‖, the counsellor started
introducing the reason for the referral. The counsellor laid the ground for her discussion,
which will follow later by referring to the process of how the woman came to be referred
to the clinic. The counsellor first introduced age when she checked in line 26, 28 whether
184 Chapter 7 Results II - Analysis of the Opening Phase
the woman was over 35 years of age and pregnant before proceeding to explain in lines 32
and 34 that at the genetic clinic all women over 35 years were seen. In lines 39 and 41 the
counsellor explicitly stated the reason for the referral as maternal age (‗because of your
age‘). The emphasis on specific words i.e. ‗our‘ and ‗pregnant‘ (line 32), ‗35 years old or
older‘ (line 34), and ‗age‘ (line 39) highlighted that the reason for the referral was
maternal age. The woman‘s response (in line 36) to the counsellor‘s explanation when she
acknowledged that she was told to ‗see the counsel‘ after 35 years of age, also suggested
her orientation that age was the reason for the referral.
Excerpt 7.16: Session 01, Couns C Inexp – Do you know why were referred
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _______________ file
8 I just want to ask do you know why they’ve _______________________________
9 referred you to us today. (.) ___________
10 P: no. (1.0) ___________________________________________
11 C: did they mention anything to you (.) _______________________________________________
12 P: no nothing, I don’t even know about this _______________________________________
13 genetic counsellor, [I don’t know] ________
14 C: [okay] ___________________
15 P: what it is about, __________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 16 C: Okay so the doctors saw you? On, (.) the (.) ((date))
_______ 17 P: [yes:]
________________________ 18 C: and they did a sonar
_____ 19 P: yes?
_________________________________________________________________________ 20 C: and then (.) they send you must come to genetics but they didn’t
____________________ 21 explain why. (1.0)
____________________ 22 P: no. [Othey didn’tO]
_____ 23 C: [okay]
__________________________________________ 26 C: so how? old are you at the moment.
__________________
185 Chapter 7 Results II - Analysis of the Opening Phase
27 P: ((age)) [now.] __________________________
28 C: [you’re] ((age)) ___________
29 P: ((nods)) ________________________________
30 C: okay and you’re pregnant? _____
31 P: yes? ________________________________________________________________________
32 C: >alright< so at our clinic we see all moms who are pregnant, __________
33 P: ((nods)) _______________________________________
34 C: and they are 35? years old. or older. _________________
35 P: Hmm ((nods)) ______
36 C: oka:y ___________________________________________________________________
36 P: Ja they told me after 35 then we have to see the counsel. (.) __________________________________________
37 C: okay so they did? talk to you about it ____________________
38 P: [yes that’s what] __________________________________
39 C: [so it’s because] of your a:ge. _____
40 P: yes: _______________________________
41 C: that they’ve sent you here, __
42 P: Ja. _______________________________________________________________
43 C: so we know that (.) every single person who’s pregnant, _________________________________________________________
44 >has a chance of having a baby with a problem.<(.)
Similarly, Excerpt 7.05 below, shows the counsellor‘s emphasis on maternal age being the
reason for the referral. By using the discourse marker, ‗so‘ (line 19) the counsellor
indicated that a new topic would be discussed and stated explicitly that the doctor wanted
the woman to be seen because of her age (line 28).
186 Chapter 7 Results II - Analysis of the Opening Phase
Excerpt 7.05: Session P01, Couns A Inexp – Reason they ask you to come and see us
_______________________________________________________________ 19 C: So? Mary the reason the doctors↓ wanted you to come ___________________________________________________________________ 20 see us, is not that (.) they saw any problems on the sonar (.) ______________ 21 P: Huhu nods ______ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ______
file 22 C: okay they did one? I saw your first you had a dating scan on the 20th. _____ 23 P: yes ________ 24 C: okay? ___________________ 25 P: Yes ((nods)) ___________________________________________________________________________ 26 C: So it’s not that they saw any problems with that the only? reason __________________________________________ 27 they asked you to come see us? (.) ______________________________ 28 is because of your a:ge. (.) ___________ 29 P: OHmmO
The emphasis on the reason for the referral being advanced maternal age is even more
evident in the counsellors‘ responses when the women suggested other reasons for their
referral for genetic counselling. This occurred in two sessions. In Excerpt 7.06 (below)
the woman responded to the counsellor‘s question of whether it was explained to her as to
why she was referred, by stating that she had explained to the doctor that she had had a
number of spontaneous abortions and that she wanted to be sterilized (lines 7-13). The
counsellor‘s response in line 16 was to redirect the conversation to age by asking the
woman her age. The women gives her age and the counsellors then proceeds to explains
(lines 25-26) that the reason was because of her age and that all woman over 35 years
were referred. When the women responded to the counsellor‘s opening question by
stating a concern, the counsellors‘ redirection to maternal age, suggest that they ask the
opening questions as a way of gaining information about the woman‘s knowledge with
regard to AMA rather than being interested in any of her concerns.
187 Chapter 7 Results II - Analysis of the Opening Phase
Excerpt 7.06 21: Session 12, Couns D Exp – They see the miscarriages
_______________________________________________ 3 C: >did the doctor’s< explai:n? to you. (1.0) _ _ _ _ ______________________________________
away 4 why? they want you to s- talk to us (2.0) ___ 5 P: no: _______________ 6 C: they [didn’t-]
__________________________________________ _ _ _ _ _ _ _ _ _ _
file 7 P: [cause] me I’m explain to the doctor because they
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 8 see the miscarriage I got how many ((seven))
_ _ _ _ _ _ _ _ _ _
file 9 I got it [I say]
_ _ _ _ _ _
file 10 C: [okay]
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ __________
file 11 P: I say I suppose to: sterilize last of last year ______ 12 C: okay _______________________________________________ 13 P: but they never sterilize I want to sterilize ______ 14 C: okay _______________________ 15 P: ja they say that I can
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 16 C: and how old are you now Bethinah ________________ 17 P: I’m fo:rty now
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 18 C: you forty oh? you turn forty >this year happy birthday<
_ _ _ _ _ _ _ _ _ _
file 19 P: ja [((laugh))] __________________________________________________________________________ 20 C: [all right] so: what what we (( just want to see year okay )) (.) _______________________________________________________________ 21 we: are from the what we call the genetics department _________ 22 P: ((nods)) __________________________ 23 C: the words don’t matter _____ 24 P: uhm __________________________________________________ 25 C: what we do is we talk to all women who are ___________________________ 26 more than 35 years old ___________________ 27 P: o::kay: ((nods))
188 Chapter 7 Results II - Analysis of the Opening Phase
Similarly excerpt 7.07 shows the woman‘s concern was not taken into account when the
agenda was being set as can be seen in lines 16 - 24. The counsellor paraphrases
(formulation) (line 13, 14) the woman‘s response that she was scared about her
hypertension. Initially, the woman‘s confirmation in line 19 was met with an explanation
that they will be talking about advanced maternal age, the problems that can happen as
well as testing that can be performed (lines 22 to 26), placing emphasis on age being the
reason for the referral and the goal of the session.
Excerpt 7. 07: Session 14, Couns E Exp,– All we gonna do now is talking
_____________________________________________________ 7 P: Ye:s because I’m little bit a scared about my ______________________________________________________ 8 pregnancy so I have a high blood pressure (.) _______ 9 C: ri:ght ____________________________________________________________________________ 10 P: so:to do that procedure I think OjaO(1.0)Oit’s O(1.0)Olittle bit O(1.0) _________________________________ 11 C: right to do which procedure. ________________________________________________ 12 P: I: think it’s this u:hm genetic (.) tic (.)OjaO ______________________________________________________ 13 C: okay so you’re worried that because you’ve got ____________________________________________ 14 problems with high? blood pressure? _____ 15 P: yes _____________________________________________ 16 C: that anything else we might need to do ______ 17 P: uhm ______________________________________ 18 C: is gonna cause mo:re [problems] _____________ 19 P: [Ja::,] ja: ____________________________________________________________ 20 C: okay(.) so Harriet all we gonna do now is talking (.) ______ 21 P: okay ______________________________________________________________________ 22 C: uhm all I’m gonna talk to you abou::t is uhm (.) the age(1.0) _____ 23 OjaO _________________________________________________________________________________ 24 C: and sometimes the problems that can happen when a woman is older? ________ 25 P: OokayO ___________________________________________________ 26 C: and what the tests are that we can offer you. ________ 27 P: OokayO
189 Chapter 7 Results II - Analysis of the Opening Phase
Setting an agenda has been investigated extensively in genetic counselling interactions as
well as medical interactions. Whether the agenda is doctor or patient led received a lot of
attention with different findings from various studies. In genetic counselling studies,
findings on the agenda showed great variation. Establishing the agenda was found to
involve asking the patients questions, such as ‗what important questions or issues did you
hope we can go over today?‘ (Butow & Lobb, 2004). An agenda was discussed in 95% of
cancer genetic counselling cases (Pieterse et al., 2005) while no negotiation at the
beginning of the session of what the patient‘s concerns were or what needed to be
discussed was found in a study by Smith et al. (2000). Setting the agenda in the
interactions in the present study is counsellor-driven as found in other studies (Smith,
2000, Butow & Lobb, 2004). With the exception of two sessions, the women did not state
their own reasons for being at the clinic and they did not share their concerns what they
would have liked to have known about. Further, the framing of the questions, the
techniques used by the counsellors and the uptake of the women‘s responses allowed for
the setting of a narrow agenda. This narrow agenda is evidenced by the question formats,
which is directed at gaining information of the women‘s knowledge of AMA risks. The
counsellors use this information to introduce the concepts of AMA and open up an
interactional space for providing the women with information regarding their risks,
relevant procedures and options.
The counsellor driven agenda also seems to be influenced by the medical system and the
genetic counselling agenda. To a degree, the reason for the interaction is determined
partly by this medical indication and this seemed to have influenced the interactions due to
the counsellors‘ opening questions being rather to gather information than exploring the
women‘s concerns. The genetic counselling agenda is that: As a woman’s risk of having a
190 Chapter 7 Results II - Analysis of the Opening Phase
baby with a chromosome abnormality increases with maternal age (artificial cut off at 35
years), such at risk women should be offered genetic counselling and prenatal genetic
diagnosis. Both participants reveal this agenda in the interactions and shows how the
genetic counselling session is ‗talked into being‘.
On several occasions during the interactions, the counselled referred to the referral system.
The mention of the referral system in the present study also reveals how the participants
are producing ‗the institution of genetic counselling‘. As the analysis of the opening
questions illustrated, the way the questions were framed showed that the counsellors
worked within a system where (mostly) doctors (shown in excerpts 7.01 and 7.2) referred
woman over the age of 35 years for genetic counselling. Further, as excerpt 7.01 showed
(lines 15-20) there is a referral system in place whereby the doctors will see a woman
determine her age, perform an ultrasound evaluation and then refer those of advanced age
for genetic counselling. The counsellors‘ emphasis on ‗at our clinic this is what we do‘ is
positioning the genetic clinic within the referral and bigger institutional setting. It was
also evident that not only the genetic counsellors and the doctors, but also the support staff
was familiar with this referral system, as shown in excerpt 7.02 where the counsellor
(lines 1-3) stated that the support staff informed her that the woman was not informed
about the reason for the referral.
7.3 Agency
The tightly controlled structure of the opening phase and the way in which the agenda was
set allowed the counsellors to exert control over the interactions. The counsellors
controlled the agenda by the way they framed their questions and their uptake of the
191 Chapter 7 Results II - Analysis of the Opening Phase
women‘s responses as they chose whether or not use the given information. The
counsellors drove the process, made decisions about what should happen next in the
session, and initiated the different phases during the openings. The genetic counsellors
had a clear goal going into the session that was evident by the rigid structure they
followed, which involved frames to shifts topics and specific questions designs. The
excerpts in the previous section illustrated this.
It was also found that the women had less agency in these interactions as seen in the
counsellor‘s uptake of the women‘s responses. In two sessions, the women introduced
another reason or concern for their attendance at the session, the counsellor redirected the
talk to maternal age. In the previous section, excerpt 7.06 and 7.07 showed that the
counsellor introduced maternal age when the woman was concerned about miscarriages
and when the woman was scared about her maternal hypertension. It seems that in the
rare instances when the women participated and shared, the counsellors choose to
introduce maternal age, negating the women‘s contribution.
Further evidence that the women appeared to have little choice but to follow the
counsellors‘ agenda, manifested in their failure to respond when they were given
interactional space. Explicit attempts from the counsellors to involve the woman were
made in eight sessions, in which the women were invited to ask questions or to ask for
clarification. However, the women‘s responses suggest that they did not perceive
themselves as having much agency. Excerpt 7.08 shows the woman responding by saying
‗no I‘ve got no questions‘. The rise in intonation of the ‗no‘ in line 109 and the ‗hmm‘ in
line 111 indicated hesitancy. The counsellor gave the woman two opportunities but she
did not voice any concerns.
192 Chapter 7 Results II - Analysis of the Opening Phase
Excerpt 7.08: Session 16, Couns F Exp – I‘ve got no questions
____________________________________ 107 C: ookayo (1.0) have you got any ______________________________ 108 questions for me so far. ________________________________ 109 P: No? (I’ve got no questions) ________________________, 110 C: ono questionso okay _________ 111 P: hmm?
Similarly in excerpt 7.09, the women did not raise concerns. In addition the excerpt
shows that the woman treated the counsellors‘ invitation as news.
Excerpt 7.09: Session 12, Couns D Exp – I must ask
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
File 49 C: >and you must please<? (1.0)..hh if I’m _ _ _ _ _______________ 50 going too quickly? _______ 51 P: Uhm ________________________________________ 52 C: Or you’re not understanding me? ___________________________ 53 P: I must ask (you again) ________________________________ 54 C: you must tell me to >stop<.
_ _ _ _
file 55 P: O:h
_ _ _ _ _ _ _
file 56 C: [alright.]
_ __ _ _ _ _ _
file 57 P: [oalrighto]
_ _ _ _ _
file 58 C: so ………..
The woman initially responded to the counsellor by saying ‗I must ask..‘. Her responses
further down in lines 55, 57 showed that she treated the invitation from the counsellor as
unexpected. The rise in intonation of ‗oh‘ and the softly spoken ‗alright‘ indicated that
this process is unfamiliar.
193 Chapter 7 Results II - Analysis of the Opening Phase
Similarly, in excerpt 7.10, the woman‘s response to the counsellor inviting her to interrupt
if she did not understand demonstrated this request to be unusual. The rise in intonation
(line 53) on ‗aai‘ followed by saying ‗you can talk‘ could suggest the woman‘s
unfamiliarity and uncertainty with the situation and resulted in her opting to allow the
counsellor to continue her discussion. Penn & Watermeyer (2012) found patients in the
South African healthcare setting to have high regard for the doctors as a result the woman
might have felt that she had to go along with the counsellor out of respect for her as a
professional.
Excerpt 7.10: Session P03, Couns B Inexp – Aai you can talk
_ _ _ _ _ _ _ _ _ _ _ ______________________________
P’s phone 50 C: okay, so (2.0) if you have any questions ________________________________________________________ 51 please just stop me (1.0) and ask me okay (1.0) _____________________________________ 52 at any time when we’re talking. ____________________ 53 P: aai? you can talk ___________________________________________________ 54 C: okay. alright if you do have a question stop _____ 55 P: Yes _________________________________________ 56 C: okay. alright so >first? Of all I just<
The excerpts showed that the genetic counsellors started the interaction and made
decisions regarding how to pursue the women‘s responses, which is similar to medical
encounters where doctors initiate the interaction (Byrne and Long 1976; Heath 1981;
Heath 1986; Robinson 1998; Robinson and Heritage 2005; Robinson 2006). This
structure, by allowing the counsellor to be the first speaker and to make post- answer
assessments, granted the counsellors control over the interaction (Mishler, 1981). Less
participation from women was evident since they were seldom first speakers but rather
responders. In addition to this the counsellors‘ restriction on what the women are allowed
194 Chapter 7 Results II - Analysis of the Opening Phase
to exercise control over, contributed to the counsellors having more agency than the
women do. In excerpt 7.08, the counsellor‘s questions (line 107) were asked after she had
explained to the woman that the doctors wanted the genetic counsellor to discuss the test
that is offered to women of AMA. It therefore seems that the invitation to ask a question
is limited to the preceding information provided by the counsellor. Restrictions placed on
what the women can ask questions about it, was further evident in excerpt 7.09. Here the
counsellor did not invite the woman to ask a question as shown in lines 49-52 but rather
stated that woman should stop her if she is ‗going too quickly‘ or if she is ―not
understanding‘. It suggests that even though the counsellor opened up interactional space
for the woman, the woman was limited to respond to the speed and the content of the
information which will be delivered.
7.4 Counselling versus teaching
The genetic counsellors made several attempts during the openings to position themselves
as ‗counsellors‘, and building a relationship received much attention. The introductions,
greetings, reference to the current research project and attempts to set an agenda, inviting
questions and offers of observation were all strategies the counsellors used to build rapport
and include the women. The counsellors placed emphasis on the relationship and on
putting themselves and the women on an equal footing. There seems to be tension between
attempts to build a relationship and controlling the agenda and these are discussed further
in the discussion.
The counsellors made an effort to include the woman by the way they introduced
themselves informally, by first name only, as shown in excerpt 7.11. By doing this, the
195 Chapter 7 Results II - Analysis of the Opening Phase
counsellors were indicating their wish to talk on equal terms and may also have been
emphasizing that the genetic counselling session was also a ‗counselling session‘, rather
than a medical encounter.
Excerpt 7.11: Session 01, Couns C Inexp – Typical introduction sequence
_ _ _ _ _ _ _ _ _ _ _ ______________________________________ file
1 C: okay Nompilo? so > my name is < Trisha? (1.0) _________ 2 P: OokayO ____________________________________________ 3 C: and I’m from the genetics clinic? (1.0) ________ 4 P: OokayO
During the introductions, it was clear that the session was a first consult as the counsellors
gave their names and checked whether they had the correct names for the women. The
counsellors knew the women‘s names from their files and this finding is similar to that
from Byrne and Long‘s (1976) study, which showed that doctors used the medical records
or their memory (when seeing follow-ups) to give recognition to patients. The counsellors
in the present study had access to the patients‘ files and antenatal cards before the sessions
and personally called the patients from the waiting area to the counselling room.
Counsellors do not have titles such as doctors or nurses and therefore they are not able to
state ‗so I am Dr X‘. The fact that all the counsellors in all their sessions provided their
first names only seems significant and suggests a more informal and open approach,
compared to introducing themselves as ‗so I am Ms X‘.
In all the sessions the counsellors provided the patients with information regarding what
they could expect to happen during the session. This was not observed in medical
196 Chapter 7 Results II - Analysis of the Opening Phase
encounters. The counsellors took care to explain the reason for the referral as seen in
excerpts 7.11 and what the woman could expect to happen during the session.
Excerpt 7.11: Session 07, Couns C Inexp – Typical explanation of the reason for referral
_____________________________________________________ 20 C: okay so at our clinic here at genetics? (.) we see ___________________________________________________________ 21 all moms who are pregnant (.) who are 35? years ____________________ 22 old or older (1.0) ______ 23 P: okay _____________________________________________________ 24 C: uhm and we talk to them about (.) problems 25 that (.) can? Happen? (.) _____________________________________________ 26 uhm, just because we (.) get older (.) __________ 27 P: ((nods)) _____________________________________________________________________ 28 C: so uhm sometimes there >can be problems with the baby< ___________________________________________________________ 29 that are associated with (.) what we call advanced __________________________________________________________ 30 maternal age being? 35 years or older (.) OokayO _______________ 31 P: okay ((nods)) _____________________________________________________________ 32 C: we are just gonna talk about those problems? what ______________________________________________________________ 33 they are? what the doctors mean when they say that (.) _______________________________________________________________ 34 and then what test can be offered to you if you want _______________________________________ 35 to have a test or not (.) okay? (.)
The counsellors attempted to engage the women further by checking whether they agreed
with the process, asked them if they had any questions, and made observations. While the
counsellors‘ questions and strategies did not encourage the women to talk about why they
were there, it can be said that the counsellors, by merely asking the women whether they
knew why they were referred and by guiding them through the session, were attempting to
build a relationship. In the medical system in which the counsellors‘ practice, patients are
not usually asked what they know (Penn & Watermeyer, 2012) and therefore the genetic
counselling interaction was different from other medical encounters in this setting, as
197 Chapter 7 Results II - Analysis of the Opening Phase
might be expected, since counselling strategies promote starting where the patient is at,
building rapport and relationship and interactional equality.
In eight of the 17 sessions, the counsellor invited the woman to ask questions if there was
anything that she did not understand. In excerpt 7.12, the counsellor‘s question followed
her explanation of what was going to happen during the session. The yes/no interrogative
resulted in the woman responding by choosing the ‗no‘ option. The counsellor did another
check before accepting the woman‘s answer.
Excerpt 7.12 14: Session 16, Couns F Exp – Any questions for the counsellor
_____________________________________ 107 C: OokayO have you got any ____________________________ 108 questions for me so? far. _______________________________ 109 P: No? (I’ve got no questions) ________________________ 110 C: ono questionso okay _______ 111 P: hmm?
Inviting the women to ask questions seems to be an attempt to encourage them to
participate in the session (Byrne & Long, 1976). Invitations for questions occurred after
the agenda was set. By their approach the counsellors indicated that they knew that the
information was new and complex and that it was understandable, even expected, that the
women might not have been able to follow and therefore they had permission to ask for
clarification. Simultaneously, they conveyed that they wanted the women to participate in
the session.
The one instance where the counsellor addressed the woman‘s non-verbal behaviour. In
excerpt 7.13, after explaining what the reason for the referral was, the counsellor made the
remark that the woman looked worried. The counsellor offered the observation after she
198 Chapter 7 Results II - Analysis of the Opening Phase
had given the woman an explanation of the reason for her referral during which she
mentioned that ‗…. problems can happen in the pregnancy when a woman is older.…‘.
Excerpt 7.13: Session 15, Couns E Exp – You look worried
_____________________________________________ 47 C: Bongumusa you look very worried (1.0)
_ _ _ _ _ _ _ _ ________
away 48 P: .hhh n::o (1.0) _______________ 50 C: you’re not (.) ____ 51 P: No _____________________ 52 C: you feeling okay? ________ 53 P: >yes< _______________________________________ 54 C: ookayo Bongumusa if you’ve got (.) ____________________________________________________ 55 you must ask me any? questions if you want to ________________________________________________________________ 56 Okay? if you’re worried about anything, you must just (.)
The counsellor did not accept the woman‘s first negative response, as can be seen by her
two further attempts (lines 50 and 52) at giving the woman an opportunity to discuss her
‗worry‘. It can even be said that, although the counsellor finally acknowledged that the
woman was not worried, the counsellor did not fully accept this response as she continued
to invite questions (lines 54-56). Doctors were shown to offer observations in one study
(Byrne & Long, 1976) and such observation seemed to have the same effect as asking a
direct question. The effect of this action was to focus the patients‘ attention on what
tensions or fears they might have. Byrne and Long (1976) found this activity, together
with silence, was followed by patient participation and that such sessions tended to be
longer. Although there were few instances in the present study where the women were
invited to ask questions, and only one example of an offer of observation, none of these
actions resulted in increased participation.
199 Chapter 7 Results II - Analysis of the Opening Phase
At the same time, the session was about education regarding the risks and options
associated with advanced maternal age. The counsellors ensured that the women
understood that the reason for the referral was advanced maternal age, and they took much
care in explaining the associated types of abnormalities and risks. The counsellors
outlined the reason for the referral and what to expect from the session conveying that the
goal of the session was education. The fact that the women were often invited to ask
questions, showed the importance of their understanding of what was being explained.
Both the content and the strategies (which included the rigid structure of the openings and
the uptake of responses) used were in contrast to the counsellors‘ use of other strategies
which were focused on relationship building. In addition, as was seen in the previous
sections, the ways in which the counsellors set the agenda and the invitations to the
women were rather restrictive and suggested an emphasis on the educational role of the
counsellors. The simultaneous inherent emphasis on the educational role and seemingly
overt attempts to fulfil a counselling role seems to results in tension between the activities
of counselling and teaching in the interactions in the present study. This begs the question
as to whether counsellors are attempting to fulfil their counselling role because this is
expected of them, or whether this tension between the activities of teaching and
counselling reflects the difficulty of achieving both in an interaction.
7.5 Discussion
A more detailed analysis of the opening phase of the genetic counselling sessions revealed
some unique features that have not been reported in previous research in genetic
counselling encounters. It has been reported that genetic counselling sessions are opened
with preliminaries (Armstrong et al., 1998) and determining the reason for the referral
200 Chapter 7 Results II - Analysis of the Opening Phase
(Butow & Lobb, 2004; Rapp, 1988; Tovell, 2004), but details of the interactions were not
examined, unlike in medical encounters where similar activities were reported and
analysed in-depth (Byrne & Long, 1976; Heath, 1981, 1986; Robinson, 1998). There
were many similarities between the sessions in this study and medical encounters but there
were also some unique features. Greetings, introductions, asking the reason for the referral
and offering of observations have been reported in medical encounters. Reference to the
current research project, explanations of the reason for the referral and what to expect
from the session and inviting questions seemed unique to the genetic counselling
interactions in this research.
Setting the agenda was found to be a critical activity during the opening phase. In genetic
counselling interactions it has been shown that counsellors make attempts to determine the
reason for the referral (Butow & Lobb, 2004; Pieterse et al., 2005; Rapp, 1988; Smith et
al., 2000; Tovell, 2004) and in medical encounters doctors solicit presenting concerns
(Heath, 1981; Robinson, 2006). It was also shown that when the counsellor and the
patient‘s agendas were ‗matched‘ the patients felt more satisfied (Lobb et al., 2002;
Shankar et al., 1999). In the genetic counselling encounters in this study the women were
referred to the clinic. This played a role in the counsellors‘ framing of their agenda
questions. As shown, the question formats revealed that the counsellors knew that the
women were referred by a medical professional and that the women should have received
the relevant information. The question formats used allowed the women to state what they
understood about the reason for their referral but their concerns, if they had any, did not
often emerge. These formats were restrictive in that they were done in the service of
obtaining information that was used to prepare the ground for the information that was to
be communicated later in the session. Most of the genetic counsellors in their post-session
201 Chapter 7 Results II - Analysis of the Opening Phase
interviews confirmed that they did not know what the women were concerned about and
stated that the reason the women attended the clinic was that they had been referred.
The rigid structure and the order of events were a striking feature of the openings and were
also found in Tovell‘s (2004) study on one genetic counselling session conducted in the
same setting. As with the rest of the session, the structure of this phase provided a
framework in which to conduct the session. The function seemed to be to guide the
woman through the process and give direction to the session. The genetic counsellors in
their post-session interviews made reference to having had a ‗plan‘ for the session, thus
confirming that genetic counsellors‘ perceptions supported what the interactions revealed.
It seemed that the structure in the openings, coupled with the counsellors‘ agenda
questions and the counsellor‘s uptake of the women‘s responses, allowed the counsellors
more agency and power in the interactions. Agency of medical professionals over patients
(the voice of medicine) is well known (Heath, 1981; Mishler, 1981; Roberts, 2000;
Robinson, 2006). Similarly, it was shown that genetic counsellors have control in genetic
counselling interactions (Armstrong et al., 1998; Babul-Hirji et al., 2010; Hodgson et al.,
2009). In this respect, the genetic counselling interactions in this study were not very
different from the previous research as a counsellor led agenda was evident, the agenda
was tightly controlled and the voices of the women were not often heard.
The observation that the counsellors had agency in the openings and the women seemed to
be relatively passive participants may be linked to the country‘s socio-political and
healthcare history. Research has suggested that patients in this health care setting seemed
less assertive, lacked knowledge about patient‘s rights and had high regard for doctors
(Penn & Watermeyer, 2012). It is suggested that the lack of agency in these interactions
202 Chapter 7 Results II - Analysis of the Opening Phase
was reflected in the counsellors‘ agenda question formats and the structures the
counsellors put in place rather than clear orientations by the participants. The women
being part of a ‗referral system‘ is further thought to be linked to a medical setting in
which traditionally patients do not make their own health care decisions. In addition to
these aspects, it was found that the women in this study were reluctant to take up
interactional space when given the opportunity. The women‘s lack of active participation
was evident as the women seemed unfamiliar with the idea of being invited to ask
questions and they seldom initiated discussions.
The counsellors agenda were based on medical policy and the medical indication for the
referral (Centini et al., 2005), which is that a pregnant woman at an increased risk of
having an infant with a chromosome abnormality should be advised of her risks and
options. The genetic counselling agenda influenced the interactions, as shown by the
counsellors ensuring that the women understood that their advanced age was the reason
for the referral. The counsellors had a set plan of what they needed to discuss with these
women during the sessions. They ensured that the women understood the reason for
referral and by providing the plan for the rest of the session. This was confirmed in the
counsellor post-session interviews, as the counsellors emphasised that the women attended
the clinic so that they could be given information on maternal age and the associated risks,
with comments in the interviews such as ‗the patient was well informed‘, ‗she knew why‘
and ‗she went off topic‘. The counsellors claimed the right to decide what the right topic
was.
With this goal in mind the counsellors had to ensure that the woman received the
necessary education. However, simultaneously the counsellors made deliberate efforts to
203 Chapter 7 Results II - Analysis of the Opening Phase
establish a relationship with the women and to encourage them to participate in the
sessions. The counsellors‘ role, therefore, simultaneously seemed to be as educator, on
the risks and options associated with advanced maternal age, and as a counsellor, who
attempted to build a relationship and connect with the women. This is in keeping with the
definition of genetic counselling (ASHG Ad Hoc Committee on Genetic counselling,
1975; Resta et al., 2006). The counsellors referred to their relationship with the women
during their post- session interviews. Whether the emphasis on relationship building in
these interactions is as a result of the counsellors‘ perceived responsibilities or not is
unsure.
The sessions in the present study seemed to reveal tension between the activities required
by the genetic counsellors. The tension is evident in the counsellors‘ responsibility to
educate on maternal age and their attempts to ―counsel‖ by attempting an informal
approach with attempts to connect with the women. The interactions are therefore thought
to be shaped not only by the genetic counselling agenda, but also by the context of the
local health care setting and its historical and socio-political background, by the
socioeconomic and educational levels of the patient, as well as by the training of the
counsellors.
7.6 Summary
This chapter covered the description of the content and structure of the genetic counselling
session openings. These were found to consist of: the preliminaries (introductions,
greetings, reference to the current research project); the setting of an agenda (reason for
referral, explanation of the reasons for the referral and the plan for the session); and the
204 Chapter 7 Results II - Analysis of the Opening Phase
encouraging of participation (inviting questions, offering observations). The analysis
further revealed that the setting of the agenda was a process tightly controlled by the
counsellors. The framing of the questions allowed the women to respond with regard to
what they knew about their referral. In establishing the agenda, the counsellors aimed to
educate about the risks and options associated with advanced maternal age. At the same
time, they attempted to build a relationship and be counsellors, which resulted in some
tension between their counselling and teaching role. Finally, the chapter concluded with a
discussion about the institutional forces which impact on these interactions and that these
forces may be unique to this setting.
205 Chapter 8 Results III – Analysis of the Decision-Making Sequences
8Chapter 8 Results III – Analysis of the Decision-
Making Sequences
8.1 Introduction
Coming to a decision regarding whether to have an amniocentesis performed or not was a
pivotal activity in the sessions. During the preliminary analysis, it became evident that
this process contained several features that required further analysis to reveal the elements
involved. The focus of this chapter is an in-depth analysis of how the counsellor and the
women engaged in a discussion about whether or not an amniocentesis should be
performed.
This chapter begins by providing a description of the decision-making process. A
discussion on other emerging issues that include various counsellor strategies as well as
directiveness and non-directiveness follows.
8.2 A description of the process
The central reason for the genetic counselling interaction was for the women to make a
decision regarding amniocentesis and prenatal diagnosis. This was made clear by the
counsellors, during the opening phase, when they informed the women of the need to
make a decision about a test that would be discussed. The actual discussions however,
only occurred later in the session after some or all of the relevant information had been
communicated. The decision regarding amniocentesis was not made instantly but rather
206 Chapter 8 Results III – Analysis of the Decision-Making Sequences
developed during the course of the discussions. The counsellors guided the women
through the process by engaging them in several aspects of the decision. The analysis is
based on 14 of the 17 sessions as the women in three sessions were too far advanced in the
pregnancy for the amniocentesis to be performed.
The counsellors initiated the decision-making sequence mostly with a question. The
counsellors made use of open wh-type interrogatives to engage the women in a discussion.
The questions included asking the women what they thought about the risk of having an
infant with Down syndrome, what they thought about having the test done, what they
would do if the results showed that their infant had a chromosome problem and how it
would be for them if they had a baby with abnormalities. Although the discussion was
mostly initiated by the counsellors, in one session the woman volunteered that ‗she could
not take the chance‘ in response to the counsellor‘s discussion on abnormalities.
After initiating decision-making, the counsellors used several strategies to guide the
women through the process. The counsellors directed the interaction so that the women
could consider different consequences relating to the decision. These identifiable
components seem to emerge in a recurring order and the counsellors generally used
questions to initiate a discussion on the new topic. The counsellors‘ engaged with the
women about their risk, fetal abnormalities, and/or what they thought about having the test
and/or their reaction to a positive test result and/or how they imagined it would be for
them if their baby was born with abnormalities.
The sequences were concluded when the counsellors and the women came to an
agreement regarding what the women wanted to do. This was either not wanting the
amniocentesis performed (in nine sessions), choosing to have the procedure (in four
207 Chapter 8 Results III – Analysis of the Decision-Making Sequences
sessions), and in one session the couple was undecided and was given more time to
consider their decision. Of the four sessions in which the women chose amniocentesis,
one wanted to have an ultrasound first, one had to undergo an HIV test first and one
wanted to discuss the option with her husband. The conclusion of the sequences were
signalled in different ways and included having a discussion about the decision and what it
meant for the women, checking whether they were sure about what they wanted, providing
a summary and making arrangements.
The overview of the decision-making phase as discussed above revealed several
interesting features. In keeping with the rest of the session, the counsellor‘s control over
the interaction (Mishler, 1984; Pilnick & Dingwall, 2011; Ten Have, 1991) was evident in
the way in which the counsellor directed the conversation, as well as the strategies used to
engage the women in discussions regarding amniocentesis. The strategies the counsellors
used seemed to provide some evidence of how counsellors assisted women with decision-
making and they are in keeping with Veach et al. (2003) and Weil‘s (2000) advocated
strategies. Upon closer examination, several other features were revealed as will be
discussed below. The counsellors‘ strategies, how the need for a decision was introduced
and how the counsellors and women dealt with this, as well as directive and non-
directiveness will be discussed below.
8.3 Different strategies
The counsellors used a number of strategies to assist the women to come to a decision.
The counsellors directed the interaction so that the women could consider different
consequences relating to the decision of having an amniocentesis. These identifiable
208 Chapter 8 Results III – Analysis of the Decision-Making Sequences
components seem to emerge in a recurring order. In excerpt 8.01, the counsellor engaged
the woman in a discussion on the test, having a baby with abnormalities, termination of
pregnancy and outcome if no testing is performed.
Excerpt 8.01: Session 05, Couns B Inexp – Identifiable components in a recurring order
_______________ _ _ _ _ ________________________________ file
1005 C: how does this test sound to you Thembi (5.0) _______________________________________________________________ 1006 P: (give me a thoughts ) (.) I thought will they don’t have __________________________________________________________________ 1007 problem to (.) use this needle but (.) when they say (.) its ______________________________________________________________ 1008 going to be a problem when (.)I maybe the baby’s too _____________________________________________________ 1009 much growing can give me a problem you see Lines 1010 to 1033 omitted _________________________________________________________________ 1034 C: and Thembi? if we did the test (.) and we find that there ____________________________________________________________________ 1035 was a problem for the baby what would that (.) mean for ____________ 1036 you (3.0) _________________________________ 1037 P: Ohh eish I dohhn’t knhhowO Lines 1038 to 1043 omitted _______________________________________________________________ 1044 C: [not all right] okay Thembi if we could do the test and _____________________________________________________________ 1045 we find that the baby did have a problem (.)with the ___________________________________________________________________ 1046 amount of information (.) the doctors could take the baby ______________________________________________ 1047 out (.) could stop the pregnancy (3.0) _________________________________________ 1048 what do you think about that (3.0) ________________________________________________ 1049 P: ((sigh)) (3.0) Oit will be the hard (.) wayO Lines 1050 to 1078 omitted _____________________________________________________________ 1079 C: Thembi if we didn’t if we can’t do the test (.) and we _________________________________________________________ 1080 found that and the baby is born (.)if the baby did _______________________________________________________________ 1081 have a problem (.) how do you think that would be for ____________ 1082 you (3.0) _______________________________________________________________________ 1083 P: No its going to be hard to know but eish? (1.0) I must accept ______________________________________________________________ 1084 C: okay so you feel like you would have to accept? if the _____________________________________ 1085 baby? was born with a problem. Lines 1084 to 1099 omitted _____________________________________________________________ 1100 so what do you thinking about (.) what (.) you don’t ____________________________________________________________
209 Chapter 8 Results III – Analysis of the Decision-Making Sequences
1101 have to decide right now you can go and sit for half ______________________________________________________________ 1102 a hour? think ?about it okay you don’t have to decide ____________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ __________________________
file 1103 right now but because we know that you are quite far __________________________________________________________ 1104 if you want to have the test. probably need to do it __________________ 1105 today. (.) okay ______ 1106 P: uhm ________________________________________________________________ 1107 C: so I don’t know if you want to maybe go and think? for _______________________________________________________________ 1108 a little? bit? and then came back and we can talk some ______________ 1109 more (2.0) __________________________________________________________________ 1110 P: with sonar I don’t have a problem but with needle OeishO
The counsellor started the interaction with a question about the test in line 1005. This was
followed by a discussion in which the counsellor engaged with the woman. The second
cycle started in line 1034 and the counsellor asked the woman what it would mean for her
if she did the test and the result was positive. In the third cycle, line 1044, the counsellor
asked the woman whether she would terminate a pregnancy. In the fourth cycle starting in
line 1079, the counsellor asked what if testing is not done and the baby is affected. Then,
in the fifth and sixth cycles (lines 1101, 1107), the counsellor asked whether the patient
wanted more time to think.
Other than splitting the decision into smaller parts, the counsellors also made use of
questioning (PDS), scenarios, weighing up the options, and ‗what if‘ questions, to further
assist the women to come to a decision, without advising them on a course of action.
Excerpt 8.02 shows a PDS.
210 Chapter 8 Results III – Analysis of the Decision-Making Sequences
Excerpt 8.02: Session 01, Couns C Inexp – PDS question
___________________________________________________________
1242 C: (.) how? would you feel if if we did this test and we
________________________________________________________________
1243 picked up your baby had a problem. (.) how would you
___________________________________________________________
1244 Feel? what would be(.) <the right thing (.) for you>
______
1245 (0.3)
_________________________________________________
1246 P: no? I’d rather stay with my child it’s [fi:ne]
The excerpt starts with the counsellor asking three wh-type interrogatives l242-1245 ‗how
would you feel‘ twice and once ‗what would be the right thing for you?‘. The counsellor‘s
questions (PDS) were designed in such a way that they invited the woman to adopt
introspection so that she could share her feelings and thoughts (Maynard (1991) and they
initiated a reflective frame (Sarangi, Bennert et al. (2004)). The woman took time (3 sec
pause) to think over the questions before she gave a response saying in line 1246 that she
would keep her baby. The counsellor not only used a PDS question format to engage the
woman but her emphasis on ‗you‘ in line 1244 further indicated the counsellor‘s
orientation that this is about what the woman wanted.
Excerpt 8.03 show the counsellors use of another strategy, sketching a scenario, for the
couple (woman (P1) and her partner (P2)). Sketching a scenario means that the counsellor
refers to a story of how another individual have dealt with a similar situation.
211 Chapter 8 Results III – Analysis of the Decision-Making Sequences
Excerpt 8.03: Session 15, Couns E Exp – Sketching a scenario
________________________________________________________________________ 1121 C: so(.)you must think(.)about(.)how you feel(.)because(.) some ____________________________________________________________________ 1122 people as I say to you they say >we are not going to do the _________________________________________________________________________ 1123 abortion< but we want to know so we are >gonna do the test.< _____ 1124 P1: yes __________________________________________________________ 1125 C: other people say to me(.) we are not gonna do the
_______________________________________________________ _ _ _
file 1126 abortion. and we don’t want this test because of this
_ _ _ _ _ _ _ ___________________________________________
file 1127 chance to make a miscarriage [we don’t want] ________________________ 1128 P1: [ ( miscarriage ) ] _______________________ 1129 C: to take that chance ___ 1130 P: ja ___________________________________________________________ 1131 C: s:o? different people they feeling? different things. ______ 1132 P1: uhm __________________________________________________________ 1133 C: so you must decide for you what is the right thing _______ 1134 P1: okay _________ 1135 (0.10) __________________________ 1136 C: it’s difficult ((laugh))
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
looks down 1137 P1: It’s to difficult now (.) at this present moment >I don’t want to
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
looks down 1138 loose the child< ( it’s time to come gonna lose because of this )
The Excerpt shows how the counsellor gave the couple a scenario of how ‗some people‘ in
line 1121, 1122, and how ‗other people‘ in line 1125, have dealt with the situation,
emphasising how people treat the situation differently, giving the couple an example of
options they can choose from. In line 1133, the counsellor explicitly stated that the couple
needed to decide what was right for them. After a long pause of 10 seconds the counsellor
remarked that it was difficult for the couple to decide, at which point the husband shared
his thoughts on the situation.
212 Chapter 8 Results III – Analysis of the Decision-Making Sequences
Another strategy used was to weigh up the different options as shown in excerpt 8.04.
Weighing up options is different to sketching a scenario as it compares two options with
each other.
Excerpt 8.04: Session 11, Couns A Inexp – Weighing up options
__________________________________________________________ 1727 C: It’s really worrying you hey? [the miscarriage risk]
_ _ _ _ _ _ _ _ _ _ _
file 1728 P: [That it’s only] _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ 1729 that miscarriages risk [and that needle] 1730 C: [It’s only that] _ _ _ _ _ _ _ _ _ _ _ _ _ ______________________________________ 1731 And I suppo:se its saying my chance of having a baby __________________ 1732 with a problem? ______ 1733 P: uhm ___________________________________________________________ 1734 C: is about hun ONE in a hun in two hundred and forty ______ 1735 P: uhm
_________________________________________ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1736 C: and the chance to have a miscarriage it is? higher then
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1737 the chance to have a baby with problems
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1737 P: But but this this needle in
_ _ _ _
file 1738 (0.2)
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1739 P: is a if she put it in my it doesn’t going to damage me?
Here the counsellor was ‗weighing up‘ the numerical risks of having a procedure related
spontaneous abortion (lines 1736-1737) to the risk of having a baby with a chromosome
abnormality in lines 1731-1732. The weighing-up was in response to the woman‘s
concern about the risk of aborting, which she stated earlier (lines not shown), and in line
1730 above. The counsellor drew the woman‘s attention to the two risks thereby inviting
213 Chapter 8 Results III – Analysis of the Decision-Making Sequences
her to think about these individually and in relation to each other. The woman was still
concerned about the needle and a further discussion ensued around the risks associated
with the test. The woman kept her gaze on the picture of the amniocentesis test on the
desk.
The counsellors further used what if/when + present/past tense questions as can be seen in
excerpt 8.05. What if questions are defined as questions that require the woman to think
about a hypothetical future.
Excerpt 8.05: Session 5, Couns B Inexp – If/when questions
__________ 1077 P: (( sigh)) ________ (2.0) _______ eisch _____________________________________________________________ 1079 C: Thembi if we didn’t if we can’t do the test (.) and we _________________________________________________________ 1080 found that and the baby is born (.)if the baby did _______________________________________________________________ 1081 have a problem (.) how do you think that would be for ____________ 1082 you (3.0) _______________________________________________________________________ 1083 P: No its going to be hard to know but eish? (1.0) I must accept ______________________________________________________________ 1084 C: okay so you feel like you would have to accept? if the _____________________________________ 1085 baby? was born with a problem.
The counsellor used a ‗what if + present tense‘ (line 1080) as she referred to undergoing
the test. Then she used an ‗if + a future tense‘ line 1081 when she referred to the baby
being born with a chromosome abnormally. The woman took three seconds before she
responded to the question by stating that it would be ‗hard‘ for her (line 1083) and she
would have to ‗accept‘ (line 1083).
214 Chapter 8 Results III – Analysis of the Decision-Making Sequences
In the process of helping the women decide the counsellors as shown in excerpt 8.06
provided the women with more information.
Excerpt 8.06 Session 1 Couns C Inexp - More information
__________________________________________________________________ 1214 C: So it >doesn’t go anywhere near< baby, it just goes into _____________ 1215 the water _______ 1216 (3.0)
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture 1216 P: I am scared of this I really scared I rather, (.) be a
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _____________
picture 1217 Surpri::se I don’t want to know because it’s going to worry me _________________________ 1218 C: It’s gonna worry you ______ 1219 P: A::hh _______ 1220 C: Okay
___ 1221 P: Ja ____________________________________________________________________________ 1222 C: You see when we if we did this test on a women, and we picked up
_ _ _ _ _ _ _____________________________ _ _ _ _ _ _ _ _ _ _ _ _ ____ _ _ _ _ _ _ _ _ _ _ _
picture picture picture 1223 the baby did have a problem, like Down syndrome? or trisomy 18? or ________________________________________________________________________ 1224 trisomy 13? the doctors would offer the women an abortion. If _____________________________________________________________________________ 1225 she wanted to end? the pregnancy (.) she would be able to(.)oOkayo _______ 1226 P: ouhmo
____________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _________________________________________
picture
1227 C: cause they do consider these chromosome? problems to be serious ___________ 1228 problems ___ 1229 P: Ja
The excerpt shows the conversation which followed a discussion about the needle and
whether it would touch the baby. The woman responded to the counsellor after a three
second pause and stated that she was ‗scared‘ and ‗worried‘. The counsellor formulated
(line 1219) the woman‘s statement that if she underwent the amniocentesis she would be
concerned about her baby throughout her pregnancy. The counsellor‘s response to the
215 Chapter 8 Results III – Analysis of the Decision-Making Sequences
woman‘s concerns was to provide her with more information regarding the abnormalities
and options available.
Finally, the counsellors, when it seemed a decision could not be reached, granted more
time to make a decision. The counsellor in excerpt 8.07, after having made several other
attempts to help the couple come to a decision, made a suggestion that they should take
more time to think about it.
Excerpt 8.07: Session 15, Couns E Exp – Granting more time
________________________ _ _ _ _ _
handbag 1157 P: yes ( too scared ) for taking ______________ 1158 C: this chance _______ 1159 P: mmm _______________________________________________________________________ 1160 C: okay(.)uhm if you tell me n:o now, that’s absolutely fine? but ____________________________________________________________________________ 1161 if you want some time to think about it, you can maybe (.)uhm (.) _____________________________________________________________ 1162 I can give you a call on Monda:y and you can tell me. ______ 1163 P: okay ________________ 1164 C: I don’t know ____ 1165 P: Eh ____ 1166 P1: [ja] _________________________________________________________ 1167 C: [do] you want to think about it or you know that
_ _ _ _ _ _
down 1168 P1: Ja but
_ _ _ _ _
down 1169 (0.2)
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
down 1170 To think about it (.) it’s a good thing _______ 1171 C: Okay
The excerpt followed a discussion regarding the couple‘s fear of losing the baby due to a
spontaneous abortion, but they also wanted to know whether the baby had abnormalities.
216 Chapter 8 Results III – Analysis of the Decision-Making Sequences
The woman‘s (P) response in line 1157 was to a question from the counsellor ‗what do
you think?‘ as there was a discussion mostly with the partner (P1) up to that point. It is in
lines 1160-1162 that the counsellor offered the couple more time to think about whether or
not they wanted to have an amniocentesis. The woman replied ‗okay‘ to which the
counsellor restated her offer twice more (line 1164 and 1167). The partner (line 1168-
1170) stated that they would take up the offer of delaying making a decision. The
partner‘s two second pause and insertion of the ‗but‘ indicated that he treated the
counsellor‘s comment to take more time as a suggestion.
By engaging with the women on all the different aspects involved in deciding whether or
not to have an amniocentesis, the counsellors used active counselling techniques. Such
anticipatory activities are advocated by Veach (2003) and are taught as counselling skills.
These techniques have been discussed in the debate about non-directiveness and how it
can be achieved in practice (Kessler 1992; Wolff and Jung 1995; Shiloh 1996; Kessler
1997b; Elwyn, Gray et al. 2000). Reflective elements, such as the PDS questions used by
the counsellors, were shown to be markers for non-directive genetic counselling (Sarangi
et al., 2004), as are explicit references, such as emphasizing that the patient‘s make the
choice and withholding advice (Pilnick, 2008). The counsellors made use of both
reflective strategies and recurring questions in this prenatal context in order to adhere to
the ethos of non-directiveness. However, some of the strategies the counsellors used
could be seen as more directive such as providing more information and granting more
time. By granting more time the counsellors suggest a course of action. This is in line with
Kessler‘s argument that a counsellor‘s course of action can suggest preferred actions
(Kessler, 1992, 1997b). By providing more information on the seriousness of the
conditions and that termination is an option, the counsellor can appear to be directing the
217 Chapter 8 Results III – Analysis of the Decision-Making Sequences
woman towards having an amniocentesis. Statements emphasising negative outcomes
(contra-indicative statements) can be heard by patients to be advice and can indicate
directiveness (Chandlin & Lucas, 1986). Pilnick (2008) argued that although there are
explicit attempts to be non-directive, the professionals‘ actions are not ‗neutralistic‘.
8.4 Orientation to decision-making
The fact that the women were required to make a decision regarding having an
amniocentesis test, was first discussed during the opening sequences of the sessions. The
counsellors described what was going to happen during the session, what the test involved
and explained that the women would be making a decision. The counsellors made it clear
that they would be giving information but the women needed to decide about the test. An
example is seen in excerpt 8.08
Excerpt 8.08: Session 13, Couns E Exp – You decide about the test
_____ _ _ _ _ _ _ ________________________________________
file 74 C: so I’m gonna tell you >all about< those thhests _____ 75 P: yes ________________________________ 76 C: and then you can dhhecide. ________ 77 P: ouhmo
The counsellor in line 74 stated that she would talk to the woman about tests, but also said
‗you can decide‘. The woman‘s response ‗yes‘ (line 75) and ‗uhm‘ (line 77) illustrated
that she agreed to this and accepted the counsellor‘s role being to provide information and
her role being to make the decision.
218 Chapter 8 Results III – Analysis of the Decision-Making Sequences
Later in the sessions how the counsellors distinguished between information delivery and
the invitation to make a decision can be observed, as shown in Excerpt 8.09. It shows
how the woman orientated to the counsellor‘s information as a need to make a decision.
Excerpt 8.09: Session 11, Couns A Inexp – Information delivery as an invitation to make
a decision
______________________________________ 1191 C: OR she d (.) we offer that to her __________________________________________________________ 1192 so she cou:ld say (.) she wants? the abortion or no. _______ 1193 P: [uhm] ___________________________________________________ 1194 C: [she] wants to carry on with the pregnancy ________ 1195 P: hmff? ___________________________ 1196 C: but she wants to know. ______ 1197 P: uhm ________ 1198 C: oka:y? ______ 1199 (1.0) _______ 1200 P: uhm
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _________
picture 1201 C: how do you how do you feel about all of this (.) _____________________________ 1202 about ha:ving? the te:st? _______ 1203 (2.0)
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture 1204 P: I want to have a thhest.
The counsellor used different pronouns to distinguish information delivery on genetics
from the invitation to decide. Lines 1191-1196 demonstrate that the information was not
designed as information about the patient but about a generic pregnant woman. The
counsellor used the third person pronouns ‗her‗(1191) and ‗she‘ (1192, 1194, 1196) to
refer to this generic woman. In line 1201 the counsellor turned to the use of the second
person pronoun ‗you‘ to invite the woman‘s decision. The excerpt shows that the
counsellor distinguished information delivery from an invitation to make a decision. The
219 Chapter 8 Results III – Analysis of the Decision-Making Sequences
invitation was explicitly made by the counsellor towards the end of the excerpt. The
woman‘s response in line 1204 shows her orientation to the invitation to make a decision
when she says I want to have a test.
In the excerpt below (8.10), the woman treated the counsellors‘ information delivery as an
invitation to make a decision without the counsellor actually inviting the decision.
Excerpt 8.10: Session 13, Couns E Exp – No invitation to make a decision
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture
983 C: but >sometimes? we can also see an extra
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
picture
984 or instead of an extra one
_________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ ___________
picture
985 there (.)we see the extra one (.) at number thirteen<
_ _ _ _
picture
986 P: yes?
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _____________
picture
987 C: >or we can sometimes see an extra one at number eighteen<
_ _ _ _ _ _ _ _ _
picture
988 P: uhm hmm
_________________________________________________________________
989 C: and those babies are very, very sick they <don’t?> live for
______________________________________________________________________
990 <long maybe (.) a few weeks (.)after they born (.) OokayO (2.0)
_____________________________________________________
991 P: I can’t even ( > I can’t even take this chance< )
___
992 C: Ja:
_____________
993 P: I can’t even
The counsellor provided information on chromosome disorders in lines 983-990. Similar
to the previous excerpt, the information was provided without reference to the woman and
her baby but in a generic manner. The woman however responded to the counsellor by
indicating a preliminary decision (991: ―I can‘t‖) which implied that she treated the
220 Chapter 8 Results III – Analysis of the Decision-Making Sequences
counsellors‘ prior information as relevant for her situation and an invitation to make a
decision.
When and how the need for decision-making is introduced in a session was examined
when antenatal screening tests were offered in the UK (Pilnick 2004; Pilnick, 2008). The
findings of the present study were similar to those of Pilnick et al. (2004; 2008) in that the
genetic counsellors introduced and ‗topicalized‘ the need for choice concerning an
amniocentesis. However, how the participants deal with making these choices was found
to be dependent on several factors. In this present study particularly, it was found that the
counsellors made great efforts to avoid persuading the woman to take a particular course
of action. These efforts seem to be in keeping with the genetic counselling profession‘s
central ethos of non-directiveness (Kessler, 1992; Weil, 2000). However, in other studies
it was found that despite the counsellors‘ efforts the interactions were somewhat directive
(Weil, 2003; Weil et al., 2006).
8.5 Directiveness and non-directiveness
In spite of attempts to be non-directive and to withhold advice as illustrated, the
counsellors‘ contributions to the interaction influenced the interaction. It was found that
the counsellors overtly orientated to non-directiveness when the women indicated that
they did not want an amniocentesis but not when they indicated they wanted the test. The
overt orientation to non-directiveness was only seen in response to a woman‘s indication
that she is not interested in having an amniocentesis. Excerpt 8.11 below illustrates this.
The interaction starts with the counsellor asking the woman how she would feel if the
amniocentesis was performed and her baby was found to have an abnormality.
221 Chapter 8 Results III – Analysis of the Decision-Making Sequences
Excerpt 8.11: Session 01, Couns C Inexp – Overt orientation towards non-directiveness
___________________________________________________________
1242 C: (.) how? would you feel if if we did this test and we
________________________________________________________________
1243 picked up your baby had a problem. (.) how would you
___________________________________________________________
1244 Feel? what would be(.) <the right thing (.) for you>
1245
________ (0.3)
_________________________________________________
1246 P: no? I’d rather stay with my child it’s [fi:ne]
____________________________
1247 C: [stay] with your [child]
_______
1248 P: [OJaO]
_________
1249 C: OOkayO
________
1250 P: OuhmO
1251 C: So for [you-] 1252 P: [I’ll just] accept
_________________________________________ _ _ _ _ _ _ _ _ _ _ _ _ _ file
1253 C: ookayo So for you if your baby has a problem, like this ____________________________
1254 it would be okay. ____ 1255 P: ja: ________________________ 1256 C: you would accept it. _________ 1257 P: ouhmo __________________________________________________________________________________
1258 C: and I know you said earlier it’s a gift from [Go:d] _________ 1259 P: [uh:m] ___________________________________ 1260 C: so for you you’d feel it’s a gift ______ 1261 P: uhm _________________________________________ 1262 C: from God (.) and it ? is your choice. _____ 1263 P: ja, I _______________________________________________________________ 1264 C: we’re just >here to provide you with the information< _______ 1265 P: okay
_________ _ _ _ _ _ _ _ _ __________________ picture
1266 C: But it’s completely up to you as to ______ 1267 P: uhm
________________________ _ _ _ _ _ ___________ picture
1268 C: >whether or not you want? this test< _____ 1269 P: Yes ________ 1279 C: or not,
222 Chapter 8 Results III – Analysis of the Decision-Making Sequences
In lines 1246 and 1247 the woman stated that she would accept a baby with an
abnormality thus indicating that she would not choose to have an amniocentesis
performed. It is in lines 1251, 1253, 1256, 1260 that the counsellor responded with ‗you‘,
indicating that it is up to the woman to decide. In line 1262 the counsellor overtly showed
her non-directive stance when she explicitly stated ‗it‘s your choice‘ again in line 1264
‗we are just here to provide you with the information‘, in line 1266 ‗but it‘s completely up
to you‘, and in line 1268 ‗whether or not you want to have the test‘. The counsellor
accentuated the words ‗completely‘ (line 1266) and ‗want‘ (line 1268), further
emphasizing that it is the woman‘s choice.
The counsellors responded differently to the women when they indicated that they are
interested in having an amniocentesis performed. In such instances, the counsellors
‗checked‘ whether the women understood what they chose as shown in Excerpt 8.12.
Excerpt 8.12: Session 11, Couns A Inexp – Check understanding
_______________________________________________________ 1199 C: HOW DO (.) how do you feel about all of this (.) ____________________________________ 1200 about having? this te::st? (1.0)
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1201 P: I want to have a thhest?
_ _ _ _
file 1202 (0.1) _________________________ 1203 C: [You want to have it]
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1204 P: [So that I must] know [very early what is] __________________________ 1205 C: [(want to see better)]
_ _ _ _ _ _ _
file 1206 P: going on ___________ 1207 C: Ohhkay
_ _ _ _ _ _
file 1208 P: >uhm< ______________________ 1209 C: you want to know.
_ _ _ _
file 1210 P: uhm
223 Chapter 8 Results III – Analysis of the Decision-Making Sequences
The counsellor started the interaction with a wh-type interrogative that served to initiate a
reflective frame (Sarangi et al., 2004). The woman answered the counsellor‘s question
‗how do‘ by indicating her decision that she wanted to have an amniocentesis. The
counsellor checked in line 1203, when she said ‗you want to have it‘ to which the woman
elaborated why she wanted the procedure. The counsellor did a further two checks in
lines 1205 and 1209. The reflective frame was successful in that the woman shared what
she wanted to do as well as elaborated on her reason why she wanted the test.
The asymmetry in the counsellors‘ responses to the women‘s indications of having or not
having an amniocentesis suggests that there was a preference for the woman to have the
amniocentesis, suggesting directiveness. When the woman indicated that she wanted to
have the procedure, the counsellors accepted the decision, but when the women indicated
that they did not want to have the procedure, the counsellors overtly orientated towards
non-directiveness thus suggesting that this was not the preferred action. This behaviour
may partly reflect ‗institutional directiveness‘ (Clarke, 1991; Weil, 2003) as the women
were referred to the clinic for a discussion about maternal age and testing options with the
premise that this offer should be accepted. In spite of the counsellors‘ attempts to
maintain neutrality, they influenced the interactions. They made use of several strategies
and made explicit reference to non-directiveness as was shown in the previous section.
Further evidence for directiveness in the interaction can be seen in the actions the
counsellors performed. Whatever the counsellor did or omitted to do had an effect on the
interactions. Excerpt 8.13 is an illustration of how the counsellor had a choice with regard
to how and when to respond to the woman.
224 Chapter 8 Results III – Analysis of the Decision-Making Sequences
Excerpt 8.13: Session P01, Couns A Inexp – Counsellor Contribution
_________________________________________________
999 P: No? OI just want to be eh eh eh (.) positiveO
______________________________
1000 C: Oyou want to be positive,O
____________________________
1001 P: I don’t want to think (.)
___________________________________________________________________
1002 C: >you don’t want to think< about all these worrying things
_____________________________________
1003 it makes you feel anxious? hey?
_______________________________________________________
1004 P: Jhha? ja and then you you becoming depressed
________________________________
1005 you sometimes, you you do
_______________________________________________________
1006 something you know, something happen to you
___________________________________________
1007 when you’re always eh eh depressed,
______
1008 C: uh:m,
__________________________
1009 P: thinking those things,
In line 1000, the counsellor ‗formulates‘ (Heritage & Watson 1980) the woman‘s prior
statement in a way that the woman did not subsequently (in line 1001) confirm. Further,
the counsellor‘s formulation in lines 1002-1003 of what the woman said before, did get a
confirmation (1004: ‗ja ja‘). However, the woman extended her comments, suggesting
that the way the counsellor formulated, was incomplete, or possibly indicating that the
woman had not yet completed what she wanted to say or that she was encouraged to
elaborate. In line 1008, the counsellor produced a continuer (‗uhm‘) that encouraged the
woman to continue her turn, which she did in line 1009.
The directiveness of the interaction was suggested by the fact that the counsellor could
have chosen to say nothing in line 1000, to produce an ‗uhm‘, or to have phrased the
formulation differently. Moreover, this argument – that something else could have been
done or said - could be repeated for each utterance the counsellor produced or, did not
produce. Whatever the counsellors chose to do or not to do, their delivery and design of
225 Chapter 8 Results III – Analysis of the Decision-Making Sequences
the discourse involved choices that did not leave the interaction untouched. While this
does not imply directing the interaction towards a particular outcome, the interaction is not
neural.
Directiveness was also evident in the way the women treated the counsellor‘s questions or
invitations. For example in excerpt 8.14, the woman treated the counsellor‘s invitation to
make a decision as if she was expected to accept the amniocentesis.
Excerpt 8.14 Session 01 Couns C Inexp – Decision as an expectation
___________________________________________________________
1242 C: (.) how? would you feel if if we did this test and we
________________________________________________________________
1243 picked up your baby had a problem. (.) how would you
___________________________________________________________
1244 feel? what would be(.) <the right thing (.) for you>
______
1245 (3.0)
_________________________________________________
1246 P: no? I’d rather stay with my child it’s [fi:ne]
The counsellor asked three consecutive open-ended questions (1242-1244) to invite the
woman‘s decision in the form of PDS. The woman treated the questions as ‗closed‘ yes/no
questions with a preference for a yes-answer. She answered ‗no‘ (1246), and she paused 3
seconds before producing the ‗no‘. Preference organisation in interaction is a practice in
which an initiated action - such as a question - has two alternative responses, ‗yes‘ and
‗no‘, that are treated asymmetrically (Schegloff, 2007). The preferred alternative is
produced in immediate response to the initiated action, while the dispreferred alternative is
produced while distancing the response from the initiative by inserting items between the
initiative and the response. These can be particles such as ‗well‘, phrases such as ‗I would
have liked to but....‘, or as in the excerpt above, a pause (line 1245). The woman‘s
response thus suggested that she treated the counsellor‘s invitation as an ‗offer‘ rather than
226 Chapter 8 Results III – Analysis of the Decision-Making Sequences
as a question and that this offer should be accepted. The woman also added ‗it‘s fine‘
(line 1246) and produced and account for her answer which further showed her orientation
that there was possibly a preference to agree with having the test done. Even though the
counsellor did not intend her wh-interrogative to imply a preference for agreeing to the
test, the woman treated it as such.
It was evident that despite the counsellors‘ efforts to maintain non-directiveness, the
interaction is affected by the counsellors. However subtle, the choice of responses, the
asymmetrical uptake of the women‘s yes and no responses, the questions asked,
formulations, the order of providing information and some of the counsellors‘ strategies,
contributed to influencing the interactions.
8.6 Discussion
The decision-making sequence was a critical aspect of the genetic counselling sessions.
As shown, the genetic counsellors informed the woman from the outset of the session that
they would be receiving information regarding a test and that they needed to make a
decision regarding whether or not to request it. Later in the session, after all, or some, of
the information had been communicated, the counsellors engaged the women in a
discussion about this decision thereby assisting them to make it.
What was apparent throughout the decision-making sequences was that the counsellors
took care not to influence or advise the women one way or the other. The counsellors‘
actions pointed to attempts to adhere to the ethos of non-directiveness as advocated since
the inception of the profession (Kessler, 1992; Marks & Richter, 1976; Weil, 2000; Wolff
227 Chapter 8 Results III – Analysis of the Decision-Making Sequences
& Jung, 1995). In their attempts, many were found to have explicitly referred to the
women‘s responsibility and right to make their own decisions, thereby emphasising
patient autonomy (Kessler, 1997c; Weil, 2000, 2003) and informed choice (Marteau et al.,
2001). To promote autonomy and assist patients with decision-making several
counselling approaches and techniques have been advocated (Veach et al., 2003; Weil,
2003). Research has shown that health care professionals have developed several
strategies to achieve non-directiveness in their interactions, such as using indirect speech
(Benkendorf et al., 2001), initiating reflective frames (Sarangi et al., 2004), presenting
screening options (Pilnick et al., 2004; Pilnick, 2008; Schwennesen & Koch, 2012) and
contrasting outcomes (Sarangi & Clarke, 2002). The counsellors in the present study were
also found to have developed similar strategies to assist their patients to decide whether
they wanted to have an amniocentesis performed. However, on closer examination, their
strategies were not all equally non-directive.
Although the genetic counsellors orientate towards non-directiveness, some of their
actions suggested a preferred course of action. It was demonstrated by others how
professionals, despite their efforts to maintain non-directiveness, influenced the interaction
by their contributions (Kessler, 1997b; Kirklin, 2007; Pilnick, 2008; Weil, 2003; Weil et
al., 2006). These findings support the notion that, in interaction, complete non-
directiveness is not possible. These seemingly contradicting findings of the counsellors
making use of active strategies to be non-directive but at the same not achieving it, may
point to how non-directiveness is defined rather than failing in the endeavour. Studies that
found that counsellors were unable to maintain non-directiveness (Hallowell et al., 1997;
Michie, McDonald, et al., 1997) may reflect the nature of an interaction rather than the
counsellors‘ approach. However, non-directiveness is a complex concept and it is difficult
228 Chapter 8 Results III – Analysis of the Decision-Making Sequences
to evaluate (Weil, 2003; Weil et al., 2006). In this study counsellor strategies were
identified and a distinction can be made between ‗counsellor strategies‘ (choice of action)
and the counselling interaction (unconscious actions). It is argued that this may be one
way of defining non-directiveness. Figure 8.1 shows how this distinction between
counsellor strategies and genetic counselling interactions might be conceptualised
although the two are inextricably intertwined.
Figure 8.1. A continuum distinguishing non-directiveness in terms of genetic counsellor
strategies and genetic counsellor interactions
While the findings of this study are, to some degree, in agreement with Wolff et al.‘
(1995) proposal that the term non-directive should be removed from the profession, it is
apparent that non-directive strategies are used and it might be valuable to define these in
terms of counsellor strategies, but also accept that no interaction can ever be completely
non-directive.
Non-Directive Directive
COUNSELLOR STRATEGIES
Breaking up decision Scenarios
Weighing up options Perspective displays
Providing more information Granting more time
GENETIC COUNSELLING INTERACTION
Providing information Granting more time
GC contribution to interaction Asymmetrical uptake of responses
Patient responses
229 Chapter 8 Results III – Analysis of the Decision-Making Sequences
The counsellors‘ orientations to non-directiveness by the use of active counselling
techniques were striking in these interactions. It illustrated the effort and care put in to
help and guide the woman through the decision-making process. As seen in the previous
result chapters, the counsellors‘ active role was a feature of the interactions as a whole
while the women remained relatively passive. In the decision-making sequences, the
counsellors‘ active role was in their introduction of different topics and strategies. While
the power asymmetry in the genetic counselling interactions in this setting is not a unique
phenomenon, (Mishler, 1984; Pilnick & Dingwall, 2011), they asymmetry in the session
in the present study could also have been influenced by local contextual factors.
It has been demonstrated that many of the patients in the health care system in South
Africa endure several barriers and inequalities in obtaining healthcare (Harris et al., 2011)
and that many lack assertiveness (Penn & Watermeyer, 2012) due to a number of reasons
some of which are related to the country‘s socio-political history. In other medical
encounters in the state system, the consultations are usually shorter and are directive in
terms of treatment outcomes and management decisions and thus the women do not have
much say in their health care decisions. Further in the case of many patients (80 %) (Kale,
1995) who seek encounters with traditional healers these interactions tend to be organized
as much more directive and not involving patient decisions (Munk, 1998). This
passiveness was echoed in the genetic counselling interactions by the fact that the women
were referred and most of them did not choose or request to attend the clinic. This
arrangement placed an additional burden on the genetic counsellors, which was possibly
the reason that they developed the deliberate strategies observed in the interactions. While
the initiation of reflective frames was found to be a feature of non-directive counselling, a
high number of such initiations were thought to signal the counsellors‘ failure in attempts
230 Chapter 8 Results III – Analysis of the Decision-Making Sequences
to engage the patients in reflection (Sarangi et al., 2004). As a result, it was possible that
the counsellor‘s repeated introductions of different aspects regarding the decision,
reflected their difficulty in engaging with the women. This suggests that non-directiveness
in these interactions was less successful in achieving its goal of helping the patients make
their own autonomous decisions.
8.7 Summary
A decision about having an amniocentesis performed is a pivotal activity in AMA genetic
counselling sessions. In this chapter the orientation towards the women‘s responsibility for
making a decision as well as the genetic counsellors‘ strategies in assisting the woman to
come to a decision were discussed. However, despite the counsellors‘ deliberate efforts to
maintain non-directiveness, directive interactions were observed. These were generally
due to the counsellors‘ choice of actions and the asymmetry in the uptake of the responses
of the women. Efforts at maintaining non-directiveness, and adhering to this central ethos
of genetic counselling, were shown to be mixed with more directive activities of the
counsellors and thus question the effectiveness of using non-directive strategies in
enhancing autonomy in this setting.
231 Chapter 9 Results IV – Analysis of the Counselling Segments
9 Chapter 9 Results IV – Analysis of the Counselling
Segments
9.1 Introduction
As was demonstrated in the preceding results chapters, the overwhelming feature of the
sessions was that the counsellors dominated the discussions by taking up more
interactional space than the women and generally lead the discussions. However, there
were other sections in which this was not the case. Such sections occurred during any
stage of the genetic counselling session. They were characterized by the women doing
most of the talking, while the counsellors were in the ‗responders‘ position, using
encouragers and other responses. Overall, the genetic counselling sessions were mostly
characteristic of the ‗voice of medicine‘, whereas in these segments the women were
allowed and encouraged to share their experiences of their everyday lives, allowing the
‗voice of the life world‘ to emerge.
The sections were termed counselling segments. The term was used as it aligns with
Kessler‘s terminology, ―counselling‖ and ―teaching‖. The sections were selected because
the women took up more interactional space. As explained in chapter 8, the demarcation
is not absolute and some the sections which were identified as decision-making could have
been called a counselling segment and vice versa. This definition ―counselling segment‖ is
not clearly effective in describing these segments as they were found to provide the
counsellors with more information, discussed a concern and be a way of connecting in
addition to showing empathy. While this limitation is acknowledged, the analyses as
232 Chapter 9 Results IV – Analysis of the Counselling Segments
presented here do provide some insight into the counselling aspects of the genetic
counselling profession. This chapter explores these counselling segments, which refer to
an identifiable segment where the woman spoke a considerable amount. It contains a
description of the function of the segments and of the counsellor strategies which
influenced the development of these segments.
9.2 Characteristics of the counselling segments
The features of the counselling segments that made them unique were the extended turns
taken by the women. This phenomenon was briefly discussed in chapter six and below is
another example (excerpt 9.01) which illustrates that the woman‘s talk predominated and
that the counsellor took up minimal interactional space. This sequence organization
mirrors the information delivery formats in HIV counselling, as the women provided the
information and the counsellor acknowledged (Silverman, 1997).
Excerpt 9.01: Session 10, Couns C Inexp – Woman‘s talk predominates
_____________________________________________________________ 264 P: ja the pain was there so and somebody has to come ___________________________________________________________________________ 265 and help me to (.)get up from? that time I had the pain TILL (.) ______________________________________________ 266 I started bleeding. and all that [it was] ______ 267 C: [so] ____________________________________ 268 P: >very, very difficult [for me]< ________________________________________ 269 C: [it was a hard] <time for you.> _______________________ 270 P: it was a ha:rd time.
Lines 264-268 show that the woman took an extended turn in which she talked about how
painful the ectopic pregnancy was, that she needed help and that she started bleeding. She
also shared how she felt as she stated it was ‗very difficult for me‘. The counsellor‘s turn
233 Chapter 9 Results IV – Analysis of the Counselling Segments
(in line 267) is minimal in that she interjects, by repeating some of the woman‘s responses
(completed in line 269).
Other researchers examining genetic counselling interactions have found that counselling
segments occur in sessions: for example Babul-Hirji et al. (2010) described similar
sections in their research during what they termed the counsellors‘ ‗humanistic voice‘.
Still others found that psychosocial styles were evident in cancer genetic counselling
sessions (Butow & Lobb, 2004; Duric et al., 2003; Ellington et al., 2005; Ellington et al.,
2006; Roter et al., 2006b).
The number of counselling segments varied considerably, not only between sessions but
also between the different sessions of a particular counsellor, and between experienced
and inexperienced counsellors. In an attempt to provide an overview, table 9.1 was
constructed. It shows that Counsellor D, who is an experienced counsellor, had a number
of counselling segments during her sessions, but none were related to showing empathy.
Counsellor B who is inexperienced had overall fewer segments but had segments that
showed empathy. Counsellor E who is experienced, had a number of counselling
segments in two of her three sessions but only had one short segment in her third session.
The summary shows the great variation but it was observed that the emphatic segments
were the most predominant type and by simply averaging the overall number of segment
of each of the sessions, the experienced genetic counsellors had more counselling
segments than the inexperienced counsellors.
234 Chapter 9 Results IV – Analysis of the Counselling Segments
Table 9.1. Summary of the number of counselling segment (No) in each session
Couns Sessions No Characteristics Empathy Connect Information Concern
Couns A P01 4 4 - - - Inexp 02 1 1 - - -
06 5 2 3 - -
11 1 - 1 - -
Ave 3
Couns B P02 2 2 - - - Inexp P03 2 2 - - -
05 1 - - 1 -
Ave 2
Couns C 01 7 5 - 2 - Inexp 07 4 2 1 1 -
10 5 4 1 - -
Ave 5
Couns D 09 5 - 1 2 2 Exp 12 7 - 2 5 -
Ave 6
Couns E 13 6 5 - 1 - Exp 14 4 2 1 1 -
15 1 1 - - -
Ave 4
Couns F 08 8 1 5 2 - Exp 16 3 - 2 1 -
Ave 6
Further examination of the segments in the present study were able to identify why and
when they occurred, providing more information than just showing that the counsellors do
sometimes take on a humanistic voice (Babul-Hirji et.al., 2012) or a psychosocial style of
interaction (Ellington et.al., 2006a).
9.3 Functions of the counselling segments
The counselling segments appeared to serve different purposes in the genetic counselling
sessions. In some instances, they were found to provide the counsellors with more
235 Chapter 9 Results IV – Analysis of the Counselling Segments
information, in other instance, the women discussed a concern, in others they appeared to
be a way of connecting, and in others they demonstrated empathy.
9.3.1 More information
The excerpt below (9.02) shows how a counselling segment functioned as a way of
obtaining more information. This segment occurred during the information-gathering
phase of the session when the counsellor was obtaining information on the pregnancy
history.
In excerpt 9.02, the counselling segment occurred after the woman informed the
counsellor that she had an ectopic pregnancy (line 235). The counsellor initially asked the
woman more questions (lines 236, 238, 240) but then in line 242 the counsellor‘s
responses changed to continuers ‗okay‘ (line 242), ‗right‘ (line 244), and ‗yes‘ (line 249).
The excerpt shows how the interaction was more than the typical question-answer
sequence, observed during the information-gathering stage, and the woman shared details
about her pregnancy loss. As seen during the other phases the counsellor held the
woman‘s gaze except when she recorded information in the patient file. It might be that a
combination of gaze and the use of continuers facilitated the development of the
counselling segment.
236 Chapter 9 Results IV – Analysis of the Counselling Segments
Excerpt 9.02: Session 10, Couns C Inexp – More information
_______________________________________
234 C: did you have any mi:scarriages?
________________________________
235 P: only? the ectopic last year
_______ _ _ _ _ _ _ _ _ _ _ _ _ _ file
236 C: okay that was last year.
____
237 P: ja?
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ file
238 C: when? in (.) when [last year?]
_______________________________________________
239 P: [In August] OI had a operationO (0.2)
_________________________________________________________
240 C: and how far pregnant were. you. did you know?
________________________________________________________________________
241 P: uhmmm (.) I THINK I (.) was even? less than three? months
_ _ _ _ _ file
242 C: okay
_________________________________________________
243 P: because I (.) didn’t get my period in Ju:ne
_______
244 C: right?
_____________________
245 P: and on the: (0.3)
_____________________
246
((DA:TE)) (2.0))
________________________________________________________________________________
247
then I I had a (.) problem that I started bleeding and all that and (.)
___________________________________________________________________________
248
when I come here they found that the: fallopian tube fractured?
____
249 C: yes
____________________________________________________________________
250 P: and then they operated to take the: fetal remai:ns (.)out
9.3.2 Discussing a concern
The next excerpt (9.03) shows how the woman when asked whether she had any problems
in her pregnancy shared her concern about having experienced pain during the pregnancy
and that she was anxious that this might indicate a threatened abortion.
237 Chapter 9 Results IV – Analysis of the Counselling Segments
Excerpt 9.03: Session 9, Couns D Exp – Discussing a concern
_____________________ 657 P: lots of problems ________________________ 658 C: what’s the problem ___________________________________________________________________ 659 P: no? no? I’m not healthy because it’s I’m on? and of ? (1.0)
______________________________________ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 660 C: okay so tell me a little bit about what’s what’s worrying (1.0) _____ 661 you _____ 662 P: me _________ 663 C: ja [( )] ____________________________ 664 P: [about] my pregnancy ___ 665 C: ja _______________________________________ 666 P: no always? they stay? here. (1.0) _________ 667 C: OuhmO ____________________________ 668 P: and I feels pains like (.) ______ 669 C: Okay ________________________________________ 670 P: I do having miscarriage you see(.) ___________________________________________________ 671 C: okay but you haven’t had any bleeding (.) _____ 672 P: No: ______________________________________________________________________________ 673 C: all right <does> that pain happen mostly when you walking? (1.0) __________________________________________ 674 or when you’re [standing for long] __________________________________ 675 P: [ am standing or whatever ] _______ 676 C: okay _________________________________________________________________ 677 P: ( at night too I feel pain ) I don’t know? what’s going on __________ 678 (inside) _________________________________________ 679 C: Obut you are you worried about itO _____________________________________________________________ 680 P: JA I’m worried because a I’m worried because I I say _____________________________ 681 maybe it’s a miscarriage. __________________________________________________________________________ 682 C: OokayO, I’m going to explain to you why? (.) you can sometimes ________________ 683 feel that pain _____________ 684 P: O>uhm<O
238 Chapter 9 Results IV – Analysis of the Counselling Segments
The excerpt shows the interaction from the point where the counsellor asked the woman to
tell her about her ‗problem‘. The woman responded by sharing some of her concerns.
After a pause of 1 second, the counsellor used her turn to ask a question (line 660). The
woman was somewhat confused regarding the counsellors‘ question. The counsellor
clarified that she meant the woman‘s concerns for her current pregnancy. After this initial
misunderstanding, the woman stated her concern (line 666) and the counsellor responded
with minimal response tokens (lines 667 and 669) which encouraged the woman to
continue. The counsellor then asked further questions; in lines 673, 674 the question was
specifically aimed at getting more information about when she experienced the pain and in
line 679 the question (b-event statement) enquired whether the woman was concerned
about it. The woman responded to the b-event statement by describing her concern and
fear of having a spontaneous abortion. The segment ended in line 682 when the counsellor
stated that she would explain what the cause of the pain was.
9.3.3 Connecting
There were several examples where the counsellors and the women engaged in ‗chatting‘.
These discussions seemed to be a way of connecting or building a relationship. The
women told stories and spoke about different aspects of their lives and the counsellors and
woman engaged in topics regarding everyday issues.
Excerpt 9.04 shows the counsellor and the woman talking about her desire for a girl. The
interaction starts with the counsellor asking the woman what she was hoping the sex of her
baby would be and she replied (lines 345-348) by expressing that she wanted a girl.
239 Chapter 9 Results IV – Analysis of the Counselling Segments
Excerpt 9.04: Session 8, Couns F Exp – Wish for a girl
________________________________________________ 344 C: so now you hoping this is gonna be a? (.) _______________________________________________________________________________ 345 P: Oh(.) I wish (.) I wish I didn’t plan for this one because I were I’m old ____________ 346 but okay? ___________________________________________________ 347 I wish (.) cause(.) it’s on the way now wish it _________________ 348 could be a girl ____ 349 C: girl ____________ 350 ((laugh)) ___ 351 Ja __________________ 352 P: Have had boys ____________________ 353 That will be nice ___________________________________________________________________________ 354 C: that will be nice, how are you feeling about the pregnancy now.
The counsellor‘s response was to repeat ‗girl‘ (line 349). In her turn, she further
elaborated and stated that she had had boys and again expressed her desire for a girl. In
line 354, the counsellor simultaneously ended the discussion regarding the sex of the baby
and introduced a new topic.
9.3.4 Empathy
The majority of the counselling segments functioned as a way of showing empathy.
Excerpt 9.05 provides an illustration.
The excerpt starts with the counsellor‘s formulation of the woman‘s previous statement.
The woman treated the counsellors‘ response as an invitation to share, which she did over
five lines (line 289-293).
240 Chapter 9 Results IV – Analysis of the Counselling Segments
Excerpt 9.05: Session 10, Couns C Inexp – Show empathy
________________________________
288 C: you have to [lo:se the baby]
_______________________________________________
289 P: [it was very] very very difficult for me to:
___________________________________________________________________
290
accept it like (.) even >after like I (get birth) it was ectopic
____________________________________________________________________________
291
and operation< (.) it was hurting inside like I (.) did it purposely
______________________________________________________________________ patient cries
292
you see (.) but I know? that I didn’t do it (.) maybe (.) God (.)
____________________________________________________________________ patient cries
293
saw that (.) I couldn’t (.) go through with that pain you see
_______________________________________________________________________
294 C: uhm (.) so it was for you it was a really ha:rd emotional ti:me
___________________________
295 P: Oit was emotional timeO
_______________________________________________________
296 C: and I can see it still upsets you?
________________________________________
297 P: it’s still(.) it’s Ostill upsets me a lotO
_________________________________________________________
298 C: what was the ha:rdest part of that time for you?
____________________
299 P: to lose the baby.
_____________________
300 C: O to lose the babyO
________________________________________________________________________________________________________________________________
301 P: because (.) after? I found out that I was (.) pregnant >I learned to as< (.)
_____________________________________________________________
302
accept it because I didn’t want a baby< (.) you see (.)
______
303 C: right
__________________________________________________________________
304 P: so I learned to a accept it when I learned? to accept it then
_____________________________________________________
305
that’s happened it was very (.) hurtful for me
The excerpt shows how the counsellor and the woman both contributed to the woman
sharing her feelings about the loss of her pregnancy. As also seen in the previous segment
in excerpt 9.04, the counsellor held the woman‘s gaze throughout the interaction.
The findings of other studies, using the ROTER scoring system have shown that
counsellors engaged in facilitatory behaviours. In cancer genetic counselling sessions
conducted by consultants, Butow and Lobb (2004), found that there were attempts at
partnership building and eliciting emotional concerns. Similarly, genetic counsellors were
241 Chapter 9 Results IV – Analysis of the Counselling Segments
shown to use a psychosocial communication pattern that functioned to show empathy and
partnership building (Roter et al., 2006b). In the study during which the counsellors‘
‗humanistic voice‘ were evident, the counsellors were also found to show empathy and
encourage emotional participation (Babul-Hirji et al., 2010).
Thus far, the findings of the present study showed that counselling segments occurred and
what their functions seemed to be in the session. Upon closer examination, the
counsellors used several strategies that allowed the woman more interactional space and
thus allowed them to share life world related issues.
9.4 Development of the counselling segments
As the previous excerpts have shown, although the women took up some interactional
space and shared information, the counsellors generally controlled the development of the
segments in the interactions as they initiated and facilitated their development. In almost
all of the cases, the counselling sequences were initiated by the counsellors in the form of
questions or statements.
The development of counselling segments was usually dependent on how the counsellors
responded to the women. When the segments developed further it was because the
counsellors facilitated this process. Excerpts 9.06 and 9.07 show the techniques the
counsellors used that allowed further development of the counselling segments.
242 Chapter 9 Results IV – Analysis of the Counselling Segments
Excerpt 9.06: Session 10, Couns C Inexp – Further development of the counselling
segment
_________________________________________________________ 240 C: and how far pregnant were. you. did you know? ________________________________________________________________________ 241 P: uhmmm (.) I THINK I (.) was even? less than three? months
_ _ _ _ _
file 242 C: okay _________________________________________________ 243 P: because I (.) didn’t get my period in Ju:ne _______ 244 C: right? _____________________ 245 P: and on the: (0.3) _____________________ 246 ((DA:TE)) (2.0)) ________________________________________________________________________________ 247 then I I had a (.) problem that I started bleeding and all that and (.) ___________________________________________________________________________ 248 when I come here they found that the: fallopian tube fractured? ____ 249 C: yes ____________________________________________________________________ 250 P: and then they operated to take the: fetal remai:ns (.)out _________ 251 C: Ookay:O _______ 252 P: hmmn _______________________________________ 253 C: and how? was? that time for you. _____________________________________________________________________ 254 P: Oit was very difficult you KNOW I didn’t know that I was __________________________________________________________________________ 255 pregnant (.) I knew when the pain started then I went to the _____________________________________________________________________ 256 doctor to go find out why do I have a pain on one side and __________________________________________________________________ 257 like (.) it used >to come every morning when I go toilet< ______ 258 C: uhm _______________________________________________________________________________ 259 P: >once I have sit? I (feel like) I can’t get up (.) from there’s a [pain] _____________ 260 C: [the pain] _____________________________________________________________ 261 P: ja the pain was there so and somebody has to come ___________________________________________________________________________ 262 and help me to (.)get up from? that time I had the pain TILL (.) ______________________________________________ 263 I started bleeding. and all that [it was] ______ 264 C: [so] ____________________________________ 265 P: >very, very difficult [for me]< ________________________________________ 266 C: [it was a hard] <time for you.> _______________________ 267 P: it was a ha:rd time. ______________________________________________________ 268 C: it was a shock to find out you were pregnant? _________________________________________________________________________
243 Chapter 9 Results IV – Analysis of the Counselling Segments
269 P: it was a shock when I went? for the pain and the doctor is not? _________________________________________________________________________ 270 telling me about the pain is telling me about the OpregnantO a _______________________________________________________________ 271 pregnancy I was sho:cked I >[couldn’t couldn’t believe]< ____________________________ 272 C: [couldn’t believe that] Iines 273 – 287 omitted
________________________________
288 C: you have to [lo:se the baby]
_______________________________________________
289 P: [it was very] very very difficult for me to:
___________________________________________________________________
290
accept it like (.) even >after like I (get birth) it was ectopic
____________________________________________________________________________
291
and operation< (.) it was hurting inside like I (.) did it purposely
______________________________________________________________________ patient cries
292
you see (.) but I know? that I didn’t do it (.) maybe (.) God (.)
____________________________________________________________________ patient cries
293
saw that (.) I couldn’t (.) go through with that pain you see _____________________________________________________________________ 294 C: uhm (.) so it was for you it was a really ha:rd emotional ti:me ______________________________ 295 P: Oit was emotional timeO ____________________________________ 296 C: and I can see it still upsets you? ________________________________________ 297 P: it’s still(.) it’s Ostill upsets me a lotO ______________________________________________________ 298 C: what was the ha:rdest part of that time for you? __________________ 299 P: to lose the baby. ____________________ 300 C: O to lose the babyO ________________________________________________________________________________ 301 P: because (.) after? I found out that I was (.) pregnant >I learned to as< (.) __________________________________________________________ 302 accept it because I didn’t want a baby< (.) you see (.) ______ 303 C: right _________________________________________________________________ 304 P: so I learned to a accept it when I learned? to accept it then __________________________________________________ 305 that’s happened it was very (.) hurtful for me
In excerpt 9.06 above, the counsellor used continuation markers such as ‗okay‘ (line 242)
and further down (line 244) she used ‗right‘ and later (line 249) she use ‗yes‘, ‗okay‘ in
(line 251), ‗uhm‘ (line 258) and ‗right‘ (line 303). Each time the woman continued her
account of the events that seemed to flow from one turn to the next. The woman‘s
responses showed that she treated the counsellors‘ continuers as encouraging her to tell
her story. In line 253 the counsellor changed her response from continuers, which she
244 Chapter 9 Results IV – Analysis of the Counselling Segments
used up to this point, and asked the woman a PDS question. The woman regarded this as
an invitation when she elaborated on her emotional reactions and then she shared more
than just an account of events. The counsellor‘s next response in line 258 was a continuer
‗uhm‘ which further encouraged the woman‘s talk as did the counsellor‘s repeat of the
words ‗the pain‘ (line 260), ‗so‘ (line 264) and ‗ it was a hard time for you‘ (line 266).
Repeating in counselling skills terminology is ‗mirroring‘ (Egan, 2001). The counsellor
then in line 271 repeated the gist of the woman‘s previous exchanges by paraphrasing (a
formulation). The woman responded by agreeing but also further elaborated her disbelief
in the doctor‘s news. The counsellor then summarized the events as they occurred (lines
omitted) and ended with stating that the pregnancy could not be continued (line 272). The
woman in her extended turn started crying as she spoke about having gone through this
experience. The counsellor responded to the woman by paraphrasing (line 294) which the
women then stated that she was still affected by the incident (line 296). The counsellor
then in line 298 asked a question about the hardest part of the experience. The woman
took up this invitation and the counsellor then repeatedly mirrored the woman‘s remarks,
which she took up as an invitation to elaborate on her story. The woman also took up the
counsellor‘s continuer, further in line 303, as an invitation.
The next excerpt shows the counsellor‘s use of specific questions and how this allowed
the counselling segment to develop.
Excerpt 9.07: Session 13, Couns E Exp
___________________ 1207 C: Are you worried? _______________________________________________________________________ 1208 P: I’m worried but I want to do it (.) I was worried before as well? __________ 1209 But uhm __________________________
245 Chapter 9 Results IV – Analysis of the Counselling Segments
1210 C: Why: are you worried? _____________________________________________________________________ 1211 P: Uhm you know (.) as a but I’m feeling strong and my husband ___________________________________________________________ 1212 is strong he’s not sick? I’m not sick? but there is? The _____________________________ 1213 chances to have an OHIVO _____ 1214 C: OjaO ______________ 1215 P: Oja positiveO ________ 1216 C: OokayO ________________________________________________________________________ 1217 P: there is the chances to be have uhm eh (.) an (.) HIV negative (.) _____________________________ 1218 you know. we don’t know. _____ 1219 C: Ye:s __ 1220 P: Ja ______________________________________________________ 1221 C: yes uhm and where do you think the HIV would _____________________________ 1222 have come from Cynthia? _________________________________________________________________ 1223 P: You know my as I told you that my husband have another ______________________________________________________________________ 1224 woman (.) I don’t know where she’s going. I’m sitting at home _____________________________________________________________________ 1225 waiting for my husband to come back always (.) by doing the _________________________________________________________________________ 1226 funny things (1.0) there to tell you the truth I don’t like the ma:le _________________________________________________________________ 1227 if (.) ah I were the other woman maybe I protect is is like ____________________________________________________________________ 1228 now (.) I don’t ca:re I don’t care maybe even if my husband’s ________________________________________________________________ 1229 gone I don’t care whether he will be back but he’s not ah _____________________________________________________________________________________ 1230 ah a (.) bad person (.) but (.) as I told you that (.) he had another woman (.) ________________________________________________________________________________ 1231 I don’t trust myself (.) sometimes (.) I always said (.) this (.) since I was __________________________________________________________________ 1232 born I (slept ) (.) he’s the one who’s (.) (been found with _____________________________________________________________________ 1233 the infection) but what is the other ones because this man is ___________________________________________________________________________ 1234 staying with me every time (.) > sometimes< he’s stays six months ________________________________________________________________________ 1235 with me and then (.) he I don’t’ know when he’s going there (.) I ________________________________________________________________________ 1236 don’t know when I ( they having a baby) so (.) he always (.) tell ________________________________ 1237 me if that woman’s pregnant
246 Chapter 9 Results IV – Analysis of the Counselling Segments
The excerpt is taken from line 1207, where the counsellor used a yes/no interrogative to
ask about the woman‘s emotional concerns regarding having an HIV test. This interaction
came after a discussion that the woman would have to undergo an HIV test first before she
could have an amniocentesis performed. The counsellor, in line 1210, then asked the
woman using an open-ended question, why she was worried. The woman treated this as
an invitation and responded by stating her concerns. The counsellor used continuers (line
1214), and ‗okay‘ line 1216, which the woman treated as an invitation to expand on her
story. In line 1221 the counsellor asked the woman another question, by linking to the
woman‘s earlier response (line 1212-1213), as to where she thought the ‗HIV could have
come from‘. The woman treated this as an invitation and took an extended turn (15 lines)
where she talked about her relationship with her husband and her fears.
Counselling segments do not always develop further, as seen in excerpts 9.08 and 9.09
where the counsellor shifted the topics. Some techniques used by the counsellors disrupted
the development of the counselling segments. Excerpt 9.08 shows how the counselling
segment was initiated by the woman, but the counsellor did not allow the segment to
develop further as she said ‗so let me explain‘ (line 1129), indicating that she wanted to
give the woman more information, before she could make the decision. The counsellor
could have asked another question or responded with a continuation marker or formulation
as seen in the previous excerpts. Instead, she used her turn to return to the explanation of
Down syndrome.
247 Chapter 9 Results IV – Analysis of the Counselling Segments
Excerpt 9.08: Session 09, Couns D Exp – New topic
_____________________________________________________________________ 1125 C: but they will always be <slower> than other children (0.1) _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1126 P: uhm, its >fine< it’s okay (.) its >mine< (.) _______ 1127 C: okay. _ _ _ _ _ _ _ _
file 1128 P: O>uhm<O _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
file 1129 C: >so let me explain< _ _ _ _ _ _ _ _
file 1130 P: ((laughs))
Similarly, in excerpt 9.09 the counsellor ended the segment by introducing a new topic,
and closing the session.
Excerpt 9.09: Session 09, Couns D Exp - Okay
____________________________________ 1769 P: and then in last (.) this month ______ 1770 (0.1) _______________________________________________________ 1771 they were here. because the school was closed _____________________________________________________________________________ 1772 so Simphiwe he took mo:ney go and buy clothes for the Children? ________________________________________________________________ 1773 and when they go back you must be nice (.) to show is __________________________________________________________ 1774 you come to (.) your father and mother’s you see _________ 1775 C: okay. _______________ 1776 P: Ouhm uhmO ________________________________________________________ 1777 C: Good? so it sounds? like you very? Happy? Hey ______________________________________ 1778 P: Oja ja ja I’m? happy? ((laughs))O _____________________________________________________________________________ 1779 C: ((laughs)) okay? Lerato I think (.) we gonna stop there what I’m ___________________________________________________________ 1780 going to do is I’m going to come with you no:w (.) ______ 1781 P: uhm
The same argument applies to both excerpts 9.08 and 9.09, as the counsellor could have
used any of the strategies seen in excerpts 9.06 and 9.07 but she chose not to do so.
248 Chapter 9 Results IV – Analysis of the Counselling Segments
Excerpt 9.09 follows a discussion about the woman and her partners‘ relationship and the
fact that he supported her children (from a previous relationship). The counsellor‘s
continuation marker ‗okay‘ (line 1779, 1780) followed by the statement that the session
had come to an end, resulted in the woman responding with a continuer, which was in
contrast to her earlier responses (lines 1773-1774, 1778). The reasons for terminating the
counselling segments is not sure, but as in the case of excerpt 9.09, it might be due to the
women‘s response that she was happy, thus indicating that further discussion is not
required.
The counsellor strategies identified in the present study were similar to those observed in
other counselling and therapeutic discourses. As shown above, the counsellor used
several types of questions that allowed the women to share how they perceived or felt
about an issue. In HIV counselling, such questions were termed circular questions (Miller
& Silverman, 1995). As seen in excerpt 9.06, line 298, the counsellor‘s question about the
hardest part of the experience allowed the woman to focus on her fear and feelings about
her situation. In HIV counselling this has been referred to as eliciting a dreaded issue
(Miller & Silverman, 1995). The counsellors were also found to repeat the woman‘s talk
by mirroring (repeating a ‗mirror‘ of the woman‘s statement) and paraphrasing (giving a
‗formulation‘ of the most salient aspect of the woman‘s response). Paraphrasing (Egan,
2001), or formulations (Heritage & Watson, 1979) has been shown in previous studies to
encourage participation (Babul-Hirji et al., 2010; Miller & Silverman, 1995; Roter et al.,
2006a).
Comparing the counsellor strategies with the functions of the counselling sequences, there
seems to be a suggestion of a link between the type of strategy used and what the function
of the segment was. Continuers were found in all types of segments, while questions and
249 Chapter 9 Results IV – Analysis of the Counselling Segments
repeating the woman‘s previous talk were more related to certain functions. In excerpt
9.03, when the counselling segment lead to a discussion of a concern, the counsellor‘s
questions had focused on that concern, for example in line 673 the counsellor asked ‗tell
me what‘s worrying you‘ and line 679 when the counsellor‘s b-event statement ‗you
haven‘t had any bleeding‖. These questions formats were different from those seen in the
empathy segments where the counsellor‘s questions elicited dreaded issues and circular
discussion as seen in excerpt 9.06 and 9.07.
Further, as seen in the connecting segments, the counsellor questions‘ and repetitions of
the women‘s talk did not seem to address deeper emotional aspects but focused on the
content of the discussion. Similar differences in levels of empathy of responses were
found in cancer genetic counselling sessions (Duric et al., 2003, p. 248). The authors
coded the levels of responses according to whether the counsellor delayed or ignored a
response (level1), or responded to content only (level 2), or responded to feelings level 3
or responded to feeling and invited elaboration (level 4). The authors provided examples:
― …. if a patient said: ―My mother died last year of breast cancer and it was terrible,‖ the
responses: ―Yes, and have any other members of the family had breast cancer?‖ would be
coded as Level 1; ―So your mother died quite recently‖ would be coded as Level 2; ―It
sounds like your mother dying was a difficult time for you‖ as Level 3; and ―It sounds like
it was a hard time. What made it particularly awful for you?‖ as Level 4. The results from
the present study seem to point to similar levels of responses to those reported by Duric et
al. (2003). What the analysis showed, in addition, was a possible correlation between the
type of response and the outcome of the segment i.e. empathy or discussion of a concern,
suggesting that counsellors could select a strategy depending on what they wanted the
discussion to achieve.
250 Chapter 9 Results IV – Analysis of the Counselling Segments
The observed non-verbal behaviours also appear to differ according to the functions of the
segments. The counsellors and women‘s gaze were directed at each other during most of
the discussion, particularly during empathy and connecting segments. It was only in the
segments where the function was to obtain more information or to discuss a concern that
the counsellors occasionally directed their gaze at the patient files to record or check
information.
9.5 Discussion
The counselling segments were defined as such, since they differed from the rest of the
session as the women took up more interactional space. In addition, the content of the
discussions related to the issues of everyday life, beliefs and emotions. An analysis of
these counselling segments provided some insight into how genetic counsellors addressed
the emotional aspects in the sessions. The counselling segments showed that the
counsellors were ‗being counsellors‘ as they allowed the women to share. This is in
contrast with the other phases where they had to obtain family, medical and pregnancy
history and explain complex scientific and medical concepts.
As discussed in Chapter 2, the extent to which genetic counsellors practise according to
‗the prevention goal‘ and the goal of ‗psychological well-being‘ (Biesecker, 2001) has not
yet been answered (Biesecker & Peters, 2001) and the profession still needs to develop an
empirical comprehensive model of practice (Fox et al., 2007; Veach et al., 2007).
Although the emotional aspects have been regarded as important and it is advocated that
these are addressed (Djurdjinovic, 1998; Weil, 2000), and if they are addressed the
patients show more satisfaction with the session (Bernhardt et al., 2000; Davey et al.,
251 Chapter 9 Results IV – Analysis of the Counselling Segments
2005) evaluating whether counsellors do this in sessions has been difficult. Research in
genetic counselling interactions has provided evidence that different styles, such as
counsellor-driven psychosocial and biomedical question and answer styles, exist
(Ellington et al., 2006; Roter et al., 2006a), that there are different ‗voices‘ in sessions
such as the ‗humanistic voice‘ (Babul-Hirji et al., 2010), and that different levels of
responses occur (Duric et al., 2003). Nevertheless, little is known about how these styles
or voices relate to each other.
In the present study, an examination of the counselling segments of the interactions
showed they had different functions in the sessions: they sometimes provided the
counsellors with more patient information, while at other times patient concerns were
addressed, allowing for building a relationship, for the counsellors to show empathy and
for the women to speak about their emotions. During these segments, the counsellors
were found to make use of several strategies, some facilitatory and others inhibiting.
When counsellors used minimal encouragers, the discussion was facilitated and the
woman shared more, as was also shown by Babul-Hirji et al. (2010). Similarly, asking
certain questions (Miller & Silverman, 1995) and using counselling skills (Egan, 2001)
seemed facilitatory and encouraged the women to share and participate in the sessions. In
counselling and psychotherapy encounters, these techniques have been used and have
illustrated how the theories of counselling are put into practice and how clients are
assisted to talk through and understand their experiences (Miller & Silverman, 1995;
Peräkylä, 2004; Silverman, 1997). In the present study, in addition to identifying
counsellor strategies, some strategies were found to be linked to achieving the different
functions. While continuers were found to encourage the woman‘s participation,
irrespective of whether the counsellor was obtaining more information or whether the
252 Chapter 9 Results IV – Analysis of the Counselling Segments
counsellor was showing empathy, only circular and future orientated questions allowed for
empathy segments. In HIV counselling sessions, the clients only experienced empathy if
they interpreted the counsellors‘ responses as ‗I hear and understand you‘ (Silverman,
1997). This might be one of the reasons for there being different functions of the strategies
used in the present study as the women could have interpreted the counsellors‘ statements
differently, thereby affecting their own responses.
Although counsellor strategies were found to affect the outcome of the counselling
segments, it is difficult to regard some strategies as better or linked to different outcomes.
Also, it was not possible to link the use of strategies to counsellor experience. There was
so much variation between and within counsellors and sessions that counsellor experience
alone could not account for it. Though the counsellors had control over the counselling
segments as they could allow or disallow their development, this does not entirely explain
the outcome. Not all the counsellor strategies worked with all the women. The use and
functions of these strategies is more complex as to how they determine the responses of
the women and the counsellors. In one session in particular, the counsellor who was
inexperienced, was unsuccessful in engaging the woman even after several attempts and
using different strategies (session P03), while in session 10, also with an inexperienced
counsellor, she was able to successfully engage with the woman. What accounts for
differences and success is complex and multidimensional and is related to counsellor
sensitivity, skills and experience as well as patient attributes and qualities.
What the analysis seemed to illustrate was that the counsellors and the women could
connect and the women‘s voices could be heard. However, the fact that the counsellors
had to use a number of strategies to engage the women, that the counsellors mostly
253 Chapter 9 Results IV – Analysis of the Counselling Segments
initiated the segments, that the topics were mostly unrelated to the medical indication for
the session, and that there were some unsuccessful attempts, could point to the counsellors
having had to work hard at building a relationship with these women. The relative
passiveness of the women observed in the session as a whole is echoed in these
counselling segments even though there was more actual participation.
Although the analysis revealed that counselling segments did occur and that counsellors
facilitated or inhibited the discussion, this does not mean that all the emotional aspects
were addressed. In some sessions there were difficulties and there were several
misunderstandings, for example in session P03 as seen below (only content is shown with
relevant points highlighted in bold) where the woman‘s use of ‗afford‘ referred to not
wanting the test while the counsellor took it to mean affordability of the test. This could be
as a result of language difficulties but also due to the counsellor orienting to the patient as
having limited financial resources as she interpreted "afford" in financial terms.
1240 P: I can’t afford to make this 1241 C: You don’t pay anything for the test because 1242 it comes the hospital pays 1243 P: No I I can’t [afford] 1244 C: [You]You don’t want to 1245 P: To make this thing
These aspects are difficult to measure in any session, and especially in these genetic
counselling interactions, where language, general and health education and other factors,
such as the reason for the interaction and the hospital setting, make the situation very
complex.
The challenge for the profession in this setting is therefore how to integrate the
information-giving with the patient‘s socioeconomic and educational status, views, needs
and expectations. This lack of integration was observed in the sessions in the present
254 Chapter 9 Results IV – Analysis of the Counselling Segments
study, suggesting that there are some difficulties in putting the proposed theories into
practice and that by trying to adhere to principles advocated by the profession, might lead
to tension in the sessions in this context.
There appeared to be tension between counselling and information giving roles as was
also shown in chapter 7. Mishler (1984) and others have drawn on the concept of the life
world and the philosophical theories which led to its conceptualisation, when examining
medical encounters. The voice of the life world is heard when patients address the
personal and social contexts of their problems. Mishler (1984) concluded that there is
tension between the voice of medicine and the voice of the life world in medical
interviews, as the two voices represent different domains of meaning. This seems to be
evident in the sessions in the present research, because the counsellors attempted to either
educate or counsel. This dichotomy between the two roles has also been highlighted in
outcomes based studies (Davey et al., 2005). The challenge therefore is how to integrate
education and counselling during an interaction. It was shown that by removing some of
the medical questions from HIV interactions, the emotional aspects were considered to a
greater extend (Sheon et al., 2010). This, however, does not address the matter entirely as
in this context medical information cannot be taken out of sessions, as it would defeat the
purpose of the consultation.
9.6 Summary
Counselling segments were different from the rest of the session as the women were found
to participate more in these than in other segments of the interaction. The women took up
more interactional space and responded by discussing issues rather than just providing
255 Chapter 9 Results IV – Analysis of the Counselling Segments
answers. The segments were found to have different functions and these included:
showing empathy, relationship building, providing information and discussing a concern.
Even though the women participated in the interaction and were less passive, the
counsellors were in control of the initiation and development of the counselling segments.
The analysis of these segments provided more information on how the counselling activity
occurred in the genetic counselling sessions and that the patient‘s emotional and life world
could be included in the interaction.
256 Chapter 10 General Discussion and Conclusion
10 Chapter 10 General Discussion and Conclusion
10.1 General discussion
The researcher entered the present study with many assumptions about the role of genetic
counsellors and their interactions with patients and had fixed ideas about the principles on
which these are based and how and what should be achieved in a session. Simultaneously,
the researcher also questioned these principles and practices and the low uptake of
services in the clinics. In performing the research, it was hoped that insights would be
gained into the practices in the setting and as the aim of the study was to investigate the
discourse in multicultural genetic counselling interactions, there was an expectation that
cultural aspects would emerge in the sessions. However, cultural aspects were not
apparent or explicitly discussed. What the study revealed instead was that the genetic
counselling sessions were a complex interplay of many factors.
It was evident that the overall structure of the sessions aligned with the definition of
genetic counselling. The data showed how the counsellors set an agenda, and revealed
how they framed their questions and how they responded to the women‘s answers during
this process. It showed how the counsellors obtained medical and family history
information by making use of a number of different question formats. The manner in
which they explained the complex medical concepts consisted mostly of long but also
shorter monologues. The counsellors assisted the women in making decisions and a
number of non-directive strategies were identified. An analysis of the counselling
segments revealed counsellor strategies and how these were linked to specific functions.
The mapping of the sessions into different phases and an examination of the sequence
257 Chapter 10 General Discussion and Conclusion
organisation of the different phases, revealed the interactional hybridity. It showed
associations between the specific phases with regard to their functions, their unique
interactional sequences and variation in non-verbal behaviours.
In addition to showing how the principles of the profession were put into practice, the
results revealed some unique features. The most striking of these were how the genetic
counsellors guided the women through the genetic counselling session. The counsellors‘
control was apparent in all six of the identified phases and was evident from the clearly
discernable and rigid overall structure: how the counsellors set the agenda, how they
introduced the different phases and topics as well as how they chose the strategies they
used. Further, the decision-making sequences illustrated how the counsellors had tried to
engage the woman, by using active strategies and introductions of various relevant
scenarios, to assist them to make their own informed decisions. Even during the
counselling segments, the counsellors directed and promoted or prevented the
development of the segment. Generally, the genetic counsellors‘ active and explicit role in
directing the interactions resulted in a counsellor led agenda.
The counsellors‘ active role and control in the interactions, linked to the interactional
asymmetry observed during these sessions. The structures and active strategies the
counsellors used, and being the first and last speaker allowed the counsellors to be in
control. The women went along with the counsellors‘ agenda. This combined with the
woman‘s lack of taking up interactional space when given an opportunity and not asking
questions, contributed for the most part of the session, to the interactional asymmetry.
The asymmetry in the interactions allowed the counsellors agency and power, while the
women remained relatively passive. Power asymmetry is a well described phenomenon in
258 Chapter 10 General Discussion and Conclusion
institutional discourses and particularly medical encounters (Mishler, 1984; Roberts,
2000). In some genetic counselling encounters others have also found that the genetic
professionals generally control the interactions and that patients‘ voices are were not
always heard (Armstrong et al., 1998; Babul-Hirji et al., 2010; Hodgson et al., 2009). The
finding that the women in this study appear disempowered is, therefore, in itself not
unique as the asymmetry is partly due to the medical agenda. However, the observed
asymmetry in these genetic counselling sessions appeared also to be linked to the setting
in which this service was provided.
The role of the setting in establishing the reason for the women‘s attendance at the clinic
manifested in the transcripts. The counsellors‘ opening questions were structured around
an implicit understanding that the women were referred for genetic counselling and there
was explicit reference made to the referral system in some of the transcripts. The women
who attended the clinic did not elect or seek out the service, instead they were integrated
into the medical referral system practiced in the state hospitals in which a pregnant woman
over the age of 35 years is routinely referred (depending on gestation) for an ultrasound
examination and/or a genetic counselling session, to discuss the risks and options
associated with advanced maternal age. The context, therefore, affected how the
counsellors structured their opening questions, which ensured that the women responded
with what they knew about their referral. The counsellors‘ question functioned as a way
of checking the women‘s knowledge regarding their referral, rather than allowing them an
opportunity to share concerns. As a result, the counsellors opening strategies and uptake
of the women‘s responses allowed the setting of a narrow counsellor driven agenda.
259 Chapter 10 General Discussion and Conclusion
The women‘s apparent disempowerment is also thought to be influenced by the historical
and socio-political history of the country in which women did not have the power (and
still do not have) to make their own healthcare and many other decisions (Harris et al.,
2011; Penn & Watermeyer, 2012). The counsellor‘s agenda was based on the
predetermined genetic counselling agenda and the women had no choice of whether they
wanted to receive this service. Both the counsellors and the women seemed go along with
the agenda and their roles. The counsellors‘ role was to provide direction while the
women‘s role was to follow. The counsellors‘ attempts at changing this role by including,
empowering and giving the women interactional space, mostly failed as was evident by
the women‘s lack of taking up these opportunities. However, the counsellors‘ strategies
were restrictive as it provided a narrow scope of what the women was allowed to
participate in.
Both, the western and traditional healthcare interactions the patients are use to in this
setting are more commonly directive and they generally receive advice and not options
(Penn & Watermeyer, 2012). As a result, patients are not expected to make their own
decisions. The decision-making in these sessions was therefore critical. The counsellors
played an active role in assisting the women in the decision-making process and took great
care and effort to be non-directive as recommended in the practice of genetic counselling.
Although their non-directive stance was evident, the strategies they developed were
directive. Inviting the women to make decisions and weigh up choices were probably
unfamiliar processes to them. As a result, the session as practiced in the setting, differed
from those they were familiar with. It is suggested that the historical inequity in the health
care context to which most women are accustomed to as well as the counsellors‘
approaches resulted in making the women‘s perceived voices weaker in the context of the
260 Chapter 10 General Discussion and Conclusion
genetic counselling clinic. Both the counsellors and the women seemed to be aware of this
and co-constructed a dialogue, which is likely to be ambivalent. The deliberate attempts to
include the women, explain processes, adhere to an ethos of non-directiveness presented
conflict and tension in these interactions as the counsellors had to take care and use
directive techniques to guide and empower these women and enhance their autonomy. The
questions of patient autonomy and patient rights are issues faced by genetic counsellors
(Kirklin, 2007; Weil, 2000). In this health care context these issues are highlighted and
instead of enhancing autonomy, some counsellor techniques may in fact serve to erode
autonomy and highlight the asymmetry of the interaction (Pilnick & Dingwall, 2011).
The present study therefore suggests that techniques used in genetic counselling which are
firmly embedded in the tradition and textbooks on this topic may need to be adapted in
this context. Recent work in Hong Kong has shown that it is becoming more apparent
that the setting has an influence on interactions (Pilnick & Zayts, 2011; Zayts & Schnurr,
2011). Traditional techniques of non-directiveness, decision-making and setting agenda
questions (Veach et al., 2003) may not be as effective in helping the emergence of
autonomy in these women as it provided an interesting contrast, by showing how
techniques thought to enhance patient autonomy achieve the opposite in the interactions in
this setting. If patient centeredness and autonomy are the aims in genetic counselling the
contextual factors will have to be included.
The results from the present study point to the difficulty of putting into practice an
endeavour, which requires education on complex topics, counselling with regard to how
these issues affect the patients and their families as well as decision-making. Tensions
seem to be related to having to simultaneously attending to the medical- and life world
261 Chapter 10 General Discussion and Conclusion
aspects relevant to the patient. As seen the role of counsellor emerged by the strategies
and structures the genetic counsellors had put into place to guide the women through the
process, addressing aspects that might impact on the sessions, encouraging participation
and the clearly discernable counselling segments, while the role of educator emerged in
the narrow agenda, need to and the detail of providing information about AMA. This is a
challenge for any genetic counselling encounter but as shown even more so in these
interactions. At first glance, it would seem that the sessions in the study were somewhat
unsuccessful because of all the points highlighted above. However, it was evident that
there were some moments of good practice, of empathic counselling and genuine concern
which points to success. As found by an analysis of a single genetic counselling sessions
in the same setting (Penn & Watermeyer, 2012; Tovell, 2004), there seemed be a
sensitivity to the women‘s needs in the sessions. The counsellors took care and effort to
guide the women through the processes and helping the women in making a decision and
in some cases their strategies used were successful. Further, in the counselling segments,
the counsellors were able to engage the women successfully as the women shared personal
issues related to their everyday life.
Success therefore does not depend entirely on the strategies used. In some sessions, it was
more difficult for the counsellors to engage the women. In particular, in session P03 the
counsellor struggled to engage the woman and there were several miscommunications
during their interaction. There was also no consistency with regard to whether more
experienced counsellors or a specific counsellor was more successful in engaging the
women. The results therefore suggest that the counsellors‘ and the women‘s unique
qualities also played a role in the success of the interactions. The patients seen for genetic
counselling are unique individuals with their own personalities, attitudes, values, beliefs,
262 Chapter 10 General Discussion and Conclusion
fears, emotions and defences (Weil, 2000). Similarly the counsellors are unique
individuals, and in addition to this, they integrate their skills and experiences in
differences ways. The uniqueness of the individuals in these sessions as others suggested
(Kessler, 1997a; Weil, 2000) effected the interactions.
The genetic counselling interaction is complex. Consequently, evaluation of the success
requires an examination of the whole, the parts and how they relate to each other. Unlike
what was expected, cultural aspects did not emerge in the sessions, questioning its
relevance for the participants. As a result, the success depends on a complex interplay of
individual qualities of the participants in the interaction, the setting, and a range of
interactional factors. Success or failure cannot be attributed to a single construct. There
are nuances and complexities and differences between individuals and within separate
sessions. As a result both barriers and facilitators to communication and the multitude of
factors which influence these are beginning to be understood. A successful clinician
working in a diverse cohort needs to strive towards understanding such influences in order
to maximise patient autonomy.
10.2 Implications and Recommendations
The findings from this study have important implications for genetic counselling practice
and training in South Africa. It provided insights into the interactions and the difficulties
experienced in the local setting and challenged textbook principles that are firmly
embedded in the profession. Informed choice, decision-making and non-directiveness
(Fraser, 1974; Marteau et al., 2001; Shiloh, 1996) and the principles of a patient-centered
approach, which were originally based on the ideas from Rogers‘ Client Centered Therapy
263 Chapter 10 General Discussion and Conclusion
(Weil, 2000), have been the cornerstones of the profession from its inception. These
principles have guided genetic counselling practices and the techniques developed to
promote patient autonomy (Weil, 2000). As seen in the transcripts the principles on which
practices are based impeded rather than facilitated the genetic counselling process in this
study. As a result, it suggests that these have to be modified to some extent for patients in
different contexts.
As seen in these interactions, setting the agenda, non-directiveness, educating and
counselling as taught and advocated in the profession resulted in less patient autonomy in
this setting. It revealed contextual influences on the interactions. The counsellors used
active counselling strategies in order to guide the women through the process. On the
other hand, counsellors adhering to advocated principles, as shown by counsellors‘
attempts to be non-directive during decision-making sequences, failed in meeting the
needs of the patients and indeed limited their practice. Interpreting these strategies within
the health care context of South Africa revealed the tension that exists between adhering
to advocated principles and applying these in practice. It therefore highlights that it is
essential that training and practice are adapted to suit the setting in which it is performed if
patient-centered interactions and respect for diversity and equality are to be achieved.
In a patient-centered approach the patient is the focus and the session and interventions are
determined by the patients‘ needs. A patient-centered approach can be aligned with
Mishler‘s (1984) concept of the ‗voice of the life world‘. It is therefore suggested that in
order for the genetic counselling sessions in this setting to be patient-centered the patient‘s
life world needs to be engaged in the session. It was shown that the counselling segments
provided an interesting contrast to the rest of the session. The apparent contrast was as a
264 Chapter 10 General Discussion and Conclusion
result of the women‘s voices being heard during these segments, as they participated more
actively in the interaction and the asymmetry lessened. Although most of these segments
were not related to the genetic counselling agenda of advanced maternal age, but rather
involved discussions about relationships, previous pregnancies or health issues, it provides
evidence that the women‘s life world can successfully be engaged in the genetic
counselling sessions in this setting. The challenge nevertheless is to bring such
participation into the genetic counselling agenda, earlier and throughout the interaction.
This provides evidence as others have also found (Penn, Watermeyer, & Evans, 2011),
that for full patient participation, counsellors should engage with the patient‘s lived
experience by including the voice of the life world. Contextual issues need to be
combined with the goals of the session in order to meet the needs of the patients.
Empowerment were found to be an important outcome of a clinical genetics encounter
(McAllister et al., 2008; McAllister et al., 2010). For a true patient centred approach
aimed at empowering the patient and enhancing autonomy, a model of genetic counselling
should allow for the life world of the patient and the genetic counselling agenda to be
integrated.
As discussed in Chapter 2 clearly defined models of practice do not exist. However, in
more recent attempts to find a suitable model, the Reciprocal Engagement Model (REM)
was proposed (Veach et al., 2007). The REM is based on the key tenets of education,
individual attributes, outcomes and that the relationship between the counsellor and that
the patient is integral to the process. While it is agreed that the tenets concerning the
relationship is integral and the patient attributes are important, and that as an outcome the
patient understands and applies the information, this model has several shortcomings,
which limits its applicability to genetic counselling in this setting. The emphasis on
265 Chapter 10 General Discussion and Conclusion
education in the model is narrowly defined which makes it less applicable in the South
African setting because most patients have been found to have a limited understanding of
genetic concepts and there are no words for genes, chromosomes and DNA in the local
languages (Kromberg & Jenkins, 1997; Penn et al., 2009; Solomon et al., 2012). While it
is agreed that education is fundamental to the genetic counselling agenda, the type of
‗education‘ needed should rather be defined as specific relevant information which the
patient requires and requests. In addition, the REM model does not appear to take the
contextual influences into consideration which this research has shown to be critical.
A new approach is suggested in which the emphasis is on bringing the patient‘s life world
into the interaction while considering the counsellor, the genetic counselling agenda and
the context. A framework is required which allows respect for individuals‘ uniqueness
within their group identity on a human rather than cultural level ―....the differences
between people are outweighed by the similarities, and .… understanding, empathy and
acceptance are activities (or qualities) that transcend cultural and social differences‖
(Spangenberg, 2003, p. 53). A patient-centered model of genetic counselling is required
drawing on sociological rather than biomedical principles. With this as a framework, the
model should allow for the patient‘s life world to be included in the session. The ‗Life
History Narrative Model‘ proposed by Kenen and Smith (1995), with some modification
to take into account the requirements of genetic counselling, seems generally suitable as
this model relies on the professional to allow the patients to tell their stories: ―By using
relatively unstructured interviews, clients are invited to speak in their own voices, allowed
to control the introduction and flow of topics and encouraged to extend their responses‖
(Kenen & Smith, 1995, p. 120).
266 Chapter 10 General Discussion and Conclusion
A new set of guidelines are therefore proposed for the development of a model for
―Contextual Genetic Counselling‖. This model is informed by the findings of the research
and draws on the successes and difficulties identified. The emphasis is on the interaction
between the patient, the counsellor and the context and relies on taking the patient, and
counsellor‘s individual attributes into consideration. These include their experiences and
skills, unique personalities, values, beliefs, hopes, fears, defences, language, emotions and
experiences. In the model, the patient and the counsellor are each represented by its own
arms. The individuals in the interaction are affected by contextual influences and, this is
represented by the third arm. These three elements come together and for the interaction to
be successful, an environment of acceptance and openness is required. The triangle in the
middle indicates the interaction between the three components, the counsellor, the patient,
and the session. Figure 10.01 is a presentation of a proposed contextual model of genetic
counselling.
Figure 10.1. A proposed contextual model of genetic counselling
267 Chapter 10 General Discussion and Conclusion
These principles could be achieved by specific techniques used by the counsellors. Such
strategies are thought to empower the patient to participate by bringing the life world of
the patient into the session and should shape how the session is structured. The types of
questions, how information is communicated, how patients are helped to make decisions,
how emotional aspects are dealt with, are key strategies that are thought to contribute to
achieving a contextual model of genetic counselling in this setting. Adapting an
ethnographic framework rather than being driven by a biomedical one. These strategies
may be summarised as follows:
Session:
Requires a flexible structure. Check and adapt continuously
Opening questions:
What do know about the reason for your referral?
Follow-up questions, such as ―What are your concerns about this?‖
Information sharing
What do you want to know?
What do you think is the cause?
What do women/others in your community think about?
Provide information relevant to the patient
Decision-making
How do you see yourself overcoming this problem?
How can I help?
Addressing emotional aspects
How do you feel about.....?
How do you deal with problems in your family?
Who gives you support?
268 Chapter 10 General Discussion and Conclusion
Active listening is a key factor and combined with pauses and encouragers after a patient‘s
turn, will allow the patient time and space to share their views. A combination of open
questions and responding techniques such as those seen during the counselling segments
(continuers, paraphrasing, mirroring, circular and future orientated questions and
questions eliciting dread issues) are key strategies.
Although this model is focussed on providing genetic counselling in this setting, it is
thought to be applicable in other settings since it takes the contextual influences into
consideration. The women in the sessions in the present study have provided some
guidance and with the diversity of patients accessing genetic counselling services and the
profession expanding, it is hoped that these lessons will be helpful elsewhere.
10.3 Methodological considerations
The sociolinguistic methodologies used in this research were powerful in revealing both
the broad features and phases of the interactions, as well as the detail. The use of these
methods allowed what actually occurred in the sessions to be revealed, because of their
focus on how one action leads to another and how these influence interactions. The
analytical approach in the study proved successful in revealing the nuances as well as the
overall structures of the interactions. The genetic counselling interactions were found to
be complex and the different phases were unique in its interactional dynamics. An
analysis therefore had to draw on the different methodologies in discourse analysis to be
effective in revealing these nuances. It is the combination of the methodologies that
allowed the complexities of the interactions to be revealed. Combining different methods
of analysis, were more effective than adhering to one specific method as each method has
269 Chapter 10 General Discussion and Conclusion
strengths and weaknesses, and drawing on the strengths of each proved effective in
revealing otherwise missed phenomena.
A broad description of the genetic counselling sessions was essential as this provided a
context in which to interpret the in-depth analysis of specific feature. Combining this with
detailed analysis on selected phases and phenomena uncovered the detail of the practice of
genetic counselling in this setting. The majority of research on the genetic counselling
process examined from a socio-linguistic perspective, as discussed in the background
chapters, has been on examining specific aspects for example non-directiveness
(Benkendorf et al., 2001; Sarangi et al., 2004), and how information is communicated
(Lehtinen & Kääriäinen, 2005; Lehtinen, 2005). Studies with such a focus revealed the
detail of the interaction but lacked a description of how the specific phenomena fitted into
the session as a whole. In a similar vein, research which (Babul-Hirji et al., 2010;
Hodgson et al., 2009) focussed mostly on a description of the entire session lacked in
examining the finer points of the different sections. It is the researcher‘s opinion that this
is a shortcoming in the literature on genetic counselling interactions. The present study
therefore is thought to contribute to the existing literature not only because of its approach,
which allowed the overall and detail to be revealed, but also because it examined the
process in an intercultural setting with interactions provided exclusively by Masters
trained genetic counsellors.
Although valuable insights were gained from the present research study, there were some
limitations. The study was conducted on a small sample in a particular setting. It will
therefore be very interesting to perform further research to examine how other settings
might influence the genetic counselling interactions. Since the findings suggested that a
270 Chapter 10 General Discussion and Conclusion
number of factors impact on the session, further studies should examine sessions in which
the reason for the referral is other than AMA, for example, a diagnosis of a genetic
condition, late onset conditions and cancer.
Further evaluations should also include first and follow-up sessions. It is expected that in
sessions where less information is required, such as follow-up sessions where the patients
have had time to absorb the diagnosis/information, the sessions would involve more
patient participation. This has been observed in HIV sessions when the lifestyle check-list
clinicians were required to complete, was removed from the sessions (Sheon et al., 2010).
In addition, it would be interesting to examine sessions in which patients requested the
service, instead of being referred as occurred in this study. It seems very likely that there
would be significant differences. As a new model has been proposed, this model should be
implemented and tested in variety of settings. This will enable it to be refined and
adapted, as more information becomes available.
The proposed model is based on data obtained from an examination of the interactions. In
the present study the views of the women were not obtained. Patient views have been
useful in other studies in revealing the patients‘ perspective and experiences of genetic
counselling (Ahmed et al., 2012a; McAllister et al., 2008) and could enhance our
understanding of the process. As explained in the methodology section, the study design
initially included data to be collected from the interactions, as well as from post-session
patient interviews. These interviews were conducted, but provided inadequate data even
though the patient participants and the interviewer were linguistically matched. It has
been the experience of others in the HCP that the patients in this setting are more reserved
in one on one interviews compared to when they are interviewed in groups settings. If
271 Chapter 10 General Discussion and Conclusion
research in this setting is planned on the patient‘s experiences of genetic counselling, it is
essential for interviews to be carefully considered and conducted and that interviewers are
well trained to ensure that rich data can be obtained.
A further important limitation of study was that the interactions were all conducted in
English, which was not the first language of the women in the study. This meant that the
participants were able to communicate in English. It was found in some of the sessions
that there were communication difficulties, particularly in session P03 as discussed in the
preceding chapters in which some miscommunications were evident. This is an important
limitation as communication difficulties due to language had been excluded by the nature
of the design of the study. One of the sessions recorded during data collection was
conducted using an interpreter. This session was excluded as it was the only mediated
session in the data set and because a variety of factors is known to influence mediated
interactions. It was felt that an analysis of one session would result in insufficient data
and would not allow any conclusions to be draw. Interpreter mediated sessions are
complex and deserve an extensive and comprehensive investigation to do it justice.
The proposed contextual model of genetic counselling is based on participants sharing a
common language and understanding each other. Without any evidence and given that
genetic counselling is a communication process, it is anticipated that a fourth arm would
need to be added to the proposed model to include the influences of a medicated session.
A similar argument can be made for the effect partners and other family members would
have on a session, as family dynamics are known to affect the genetic counselling
interactions.
272 Chapter 10 General Discussion and Conclusion
10.4 Conclusion and final reflection
This research has provided insights into the actual practice of genetic counsellors during
their interactions with their patients. These insights showed the impact of the setting and
the counsellor led agenda on the genetic counselling process and the need for developing a
contextual model of genetic counselling. The results have significance for genetic
counselling practices in South Africa. The findings provided answers to some of the
researcher‘s questions regarding what is being achieved with the services provided and
how these can be enhanced. However, the results have also provided some hope that there
are good practices and that with some appropriate adaptation of the training courses,
services can be further improved. A recent study of a local MSc (Med) Genetic
counselling student (Morris, 2013) examined how women who have had a child with a
genetic condition experienced genetic counselling, and the women stated that they valued
their genetic counselling experience.
In South Africa genetic services were started in the 1950, while the training of genetic
counsellors was initiated in 1987 in Johannesburg and 2004 in Cape Town (Kromberg et
al., 2012). South Africa is ahead of other countries including developed nations, with
regard to legislation and registration (credentialing or certification) of genetic counsellors.
Scope of profession and practice documents are available to guide and regulate the
profession. National Department of Health guidelines have been drawn up for the
provision of genetic services and medical genetics has been included in the maternity care
guidelines. In addition, departments of human genetics exist within government
structures, and in the National Department of Health a sub-directorate has been
established. However, in provincial offices genetics is part of the Directorate of Maternal,
273 Chapter 10 General Discussion and Conclusion
Child and Woman‘s health (MCWH) or a sub-directorate of MCWH. These developments
seem very promising and well established entities but the reality is that South Africa, at
present, only has six fully employed practicing genetic counsellors, in the state system.
These numbers have dropped from 13 since the present research project started. The lack
of employment has affected the training of genetic counsellors and both programmes have
not enrolled students since 2011.
In an article by Edwards et al. (2008), genetic counselling was described as one of the ‗top
careers‘ of the 21st century and the demand for the service was expected to increase
globally, as the discovery of new genes and genetic associations increase. In South
Africa, the need for genetic services is as high as in the rest of the world as the rate of a
serious genetic congenital disorder is estimated at the 53.4 per 1000 births (Kromberg et
al., 2012). Despite the obvious need for the service, and evidence that the patients value
the service, and with legislation in place, training and employment opportunities are still
not being made available. According to Kromberg et al. (2012) 34.9% of posts for
medical practitioners and 40.3% for nurses were unfilled in the state service. Historically
genetic services were located within academic departments, and this has resulted in some
of the provinces not having medical geneticists and genetic counsellors, and these staff are
not being incorporated into departments of health. These factors and the lack of political
support from government and employment agencies have made a significant contribution
to the imminent collapse of genetic counselling services in South Africa.
As explained in the methodology section, the researcher continued to practice as a genetic
counsellor while performing the research and the two roles naturally influenced each
other. The researcher continued to provide a genetic counselling service to AMA women
274 Chapter 10 General Discussion and Conclusion
and the results of the study influenced how this service was provided. This resulted in
modifications, due to the researcher‘s experience rather than based on empirical evidence.
Instead of the genetic counselling sessions being conducted one on one, as in the research
samples, the women who arrived on the day were all seen together. Discussions were held
with the women in a group session which, as with the individual sessions, contained the
medical, genetic, risk, amniocentesis and ultrasound information. The demographic and
information gathering were done individually after the group discussions. Although these
interactions were not evaluated formally it was noted that in the group discussions, the
women were less passive in the interactions and shared more information regarding what
they knew about the risks involved with AMA and what they had been told by those who
had referred them. Sometimes the women challenged the counsellors about the
information being conveyed as their mothers or aunts had normal babies when they were
‗old age‘. The women also mostly showed that they were interested in hearing the
information and those who did not want to hear did not stay. The women‘s participation
was also more evident in the individual sessions that followed the group discussions. The
opening questions such as ―what do you think about what we discussed?‖ were generally
more successful in engaging with the women and they shared information about who
makes the decisions and their concerns and fears.
Implementing these group sessions has however not been met with great enthusiasm.
There has been resistance from other medical professionals within the department as well
as other disciplines. The way the service is performed impacts on other disciplines such
as the nurses and the fetal medicine experts and it is understandable that changes will
affect them. The group sessions has also affected record keeping protocols in the
department, which further challenged its implementation. The purpose of these
275 Chapter 10 General Discussion and Conclusion
interactions seems to be overlooked in the adherence to the protocols and routines in the
clinics. Such protocols need to be re-evaluated and the focus needs to be shifted to the
needs of the patients. Genetic counselling services are at a critical point in the country
despite international acknowledgment of its importance. The uptake of services and the
number of genetic counsellors in the country is decreasing. With current health care
transformation it is essential that as genetic counsellors in South Africa our status is
rectified. This study suggests both reasons for decline and proposes some solutions.
As genetic counselling is still thought of as ―being in search of itself‖ (Veach et al., 2002,
p. 187) and has been referred to as the ―black box‖ (Biesecker & Peters, 2.001, p. 191), it
is hoped that this research has also contributed to the international literature on genetic
counselling interactions and that the insights gained here will be heeded elsewhere.
276 Appendices
11 Appendices
Appendix A: Consent form – patient participants
277 Appendices
National Health Laboratory ServiceUniversity of the Witwatersrand, School Of Pathology
Division Human Genetics
GENETIC COUNSELLING CLINIC
Hospital Street, Johannesburg 2001 PO Box 1038, Johannesburg 2000
Telephone: +27-11-489-9224/9223/9211 Fax: +27-11-489-9226
Prof A Christianson 011 489-9211 Prof A Krause 011 489-9219 Ms T Wessels 011 489-9243
CONSENT FORM – PATIENT PARTICIPANTS
Code: ______________
Researcher: Ms Tina-Marie Wessels
Supervisor: Prof Claire Penn
University of the Witwatersrand, Johannesburg
“The characteristics of the Genetic counselling process in an antenatal, multicultural
setting”
I, ………………………………………………….…………………………………….
understand and agree to participate in the study ―The characteristics of the Genetic
counselling process in an antenatal, multicultural setting‖. I understand that participation
in the above study involves having my session with the genetic counsellor video recorded
and that I will be interviewed after the session and that this interview will be audio
recorded.
I give permission for the video and audio recordings to be used for:
The research only and for it to be destroyed afterwards The research and, afterwards for teaching and training of students
Signature: ____________________________________
Witness‘ Full name (print): ____________________________________
Witness‘ Signature: ____________________________________
Date: ____________________________________
278 Appendices
Appendix B: Consent form – counsellor participants
279 Appendices
National Health Laboratory ServiceUniversity of the Witwatersrand, School Of Pathology
Division Human Genetics
GENETIC COUNSELLING CLINIC
Hospital Street, Johannesburg 2001 PO Box 1038, Johannesburg 2000
Telephone: +27-11-489-9224/9223/9211 Fax: +27-11-489-9226
Prof A Christianson 011 489-9211 Prof A Krause 011 489-9219 Ms T Wessels 011 489-9243
CONSENT FORM – COUNSELLOR PARTICIPANTS
Code: ______________
Researcher: Ms Tina-Marie Wessels
Supervisor: Prof Claire Penn
University of the Witwatersrand, Johannesburg
“The characteristics of the Genetic counselling process in an antenatal, multicultural
setting”
I, ………………………………………………….…………………………………….
agree to participate in the study ―The characteristics of the Genetic counselling process in
an antenatal, multicultural setting‖. I understand that participation in the above study
involves having my session with the patient video recorded and that I will be interviewed
after the session and that this interview will be audio recorded.
I give permission for the video and audio recordings to be used for:
The research only and for it to be destroyed afterwards The research and, afterwards for teaching and training of students
Signature: ____________________________________
Witness‘ Full name (print): ____________________________________
Witness‘ Signature: ____________________________________
Date: ____________________________________
280 Appendices
Appendix C: Patient participant information sheet
281 Appendices
National Health Laboratory ServiceUniversity of the Witwatersrand, School Of Pathology
Division Human Genetics
GENETIC COUNSELLING CLINIC
Hospital Street, Johannesburg 2001 PO Box 1038, Johannesburg 2000
Telephone: +27-11-489-9224/9223/9211 Fax: +27-11-489-9226
Prof A Christianson 011 489-9211 Prof A Krause 011 489-9219 Ms T Wessels 011 489-9243
PARTICIPANT INFORMATION SHEET
Researcher: Ms Tina-Marie Wessels
Supervisor: Prof Claire Penn
University of the Witwatersrand, Johannesburg
“The characteristics of the Genetic counselling process in an antenatal, multicultural
setting”
My name is Tina-Marié Wessels. I am a genetic counsellor in the Division Human
Genetic of the National Health Laboratory Service and the University of the
Witwatersrand.
I am conducting research in this clinic on genetic counselling – ―The characteristics of the
Genetic counselling process in an antenatal, multicultural setting‖. I am interested to
investigate what happens in a counselling session. I am hoping that a better understanding
of this process will help our department to improve the service we are offering in this, and
possibly other clinics.
I am inviting you to participate in the research. Participation in this research involves
video recording the counselling session as well as being interviewed after the session. The
video recording of the Genetic counselling session does not require you to do anything
more than being in the session with the genetic counsellor. The interview after the Genetic
counselling session will take between 30 and 45 minutes and involves answering
questions about attending the clinic, the Genetic counselling session, and the information
you received during the session. The interview will be audio recorded.
The information from the session is confidential and anonymous. The information you
share will not be linked to your personal information, only the researcher will have access
to this. The information you share will be written up and will be made available in the
scientific literature. You name will however never be linked to your responses. Should
you choose not to participate in the research, your treatment at this or any other hospital
will not be affected in any way.
For more information you are welcome to contact me or my supervisor.
T Wessels: (011) 489-9243 Prof C Penn: (011) 717-4579
282 Appendices
Appendix D: Counsellor Participant’s information sheet
283 Appendices
National Health Laboratory ServiceUniversity of the Witwatersrand, School Of Pathology
Division Human Genetics
GENETIC COUNSELLING CLINIC
Hospital Street, Johannesburg 2001 PO Box 1038, Johannesburg 2000
Telephone: +27-11-489-9224/9223/9211 Fax: +27-11-489-9226
Prof A Christianson 011 489-9211 Prof A Krause 011 489-9219 Ms T Wessels 011 489-9243
COUNSELLOR INFORMATION SHEET
Researcher: Ms Tina-Marie Wessels
Supervisor: Prof Claire Penn
University of the Witwatersrand, Johannesburg
“The characteristics of the Genetic counselling process in an antenatal, multicultural
setting”
I am conducting research in this clinic (Area 157, Johannesburg Hospital) on genetic
counselling – ―The characteristics of the Genetic counselling process in an antenatal,
multicultural setting‖. I am interested to investigate what happens in a counselling session.
I am hoping that a better understanding of this process will help our department to
improve the service we are offering in this, and possibly other clinics.
I am inviting you to participate in the research. Participation in this research involves
video recording the counselling session as well as being interviewed after the session. The
video recording of the Genetic counselling session does not require you to do anything
more than being in the session with the patient. The interview after the Genetic
counselling session will take between 30 and 45 minutes and involves answering
questions about the Genetic counselling session and your perceptions of the session and
the patient. The interview will be audio recorded.
The information from the research is confidential and anonymous. The information you
share will not be linked to your personal information, only the researcher will have access
to this. The information you share will be written up and will be made available in the
scientific literature. You name will however never be linked to your responses. Should
you choose not to participate in the research; it will not be held against you. Your current
position and promotion opportunities in the Division Human Genetics will not be affected
in any way.
For more information you are welcome to contact me or my supervisor.
T Wessels: (011) 489-9243 Prof C Penn: (011) 717-4579
284 Appendices
Appendix E: Question guides for semi-structured interview with patient
Participants
285 Appendices
QUESTION GUIDES FOR SEMI-STRUCTURED INTERVIEW WITH PATIENT
PARTICIPANTS
1. Why did you attend the clinic?
2. What did it mean for you to attend the clinic today?
3. What were you hoping to get out of the session today?
4. What did you find helpful during the session and what was not?
5. How do you think about your chances, the tests and the condition?
6. What do you think of genetic counselling?
286 Appendices
Appendix F: Question guides for semi-structured interview with genetic
Counsellor participants
287 Appendices
QUESTION GUIDES FOR SEMI-STRUCTURED INTERVIEW WITH GENETIC
COUNSELLOR PARTICIPANTS
1. What were your expectations of the session?
2. What do you think the patient got out of the session?
3. What facilitated discussion?
4. What are your feelings about the patient?
5. How do you think the patient thinks about her risks, tests and the condition?
288 Appendices
Appendix G: An ethnographic description of the waiting area at the
Specialists Clinic at RMMCH
289 Appendices
The waiting area at the specialists Clinic RMMCH
It‟s a chilly Friday morning in July and we are on our way to Coro
(RMMCH) clinic. It‟s a weekly clinic shared with the cardiologists. The
clinic is nice and cosy. The area is not very large which contributes to the
cosiness. The patient waiting area, to the left just after you enter, has
eight long wooden benches and is decorated with bright curtains and
health education posters. There are children and adults all dressed in
jerseys and jackets against the cold. Children are entertained by a play
corner and the adults by a television. Patients talk across the room
greeting each other. Everyone is waiting for their name to be called.
Genetics were the first to call for patients. A friendly doctor comes in and
asks a patient to accompany her to the consulting room. Moments later
another woman was signalled to accompany a doctor. More patients
enter. Sisters and other staff also come and go, chatting to patients.
We wait, entertained by soccer on the television. Some patients are
having their breakfast. This makes me wonder where they travelled from,
what time they had to wake up, how many taxi‟s or trains they had to take
and how far they had to walk. A mother and her little boy arrived just
after me. The little boy greeted me very friendly “hello ma‟m”. Why are
they here? He walked with a limp and I found myself hoping he doesn‟t
have some form of muscular dystrophy.
Only one woman was waiting without a child. She was called early. A
counsellor came in to call another woman, Mary, but she was not there.
The other patients said she just went out. The counsellor came back to
check if Mary came back every now and again. Where did she go? She
had to be of advanced maternal age. Was she a new patient or a follow-
290 Appendices
up? I don‟t know how long she was there before we came. Did she leave
because she was scared of what she was going to be told or was she just
tired of waiting or did she have to be at another appointment? The
waiting room got fuller and fuller. Patients started chatting, mothers fed
their babies and the little boy watched the soccer with enthusiasm. He
and his mom are playing - pushing each other left to right. As the
morning progressed the children got more restless. Outside you can hear
staff talking. Another patient was called – still no Mary. The counsellor
took another patient. Babies babbled, a little girl played with the hand-
me-down Fisher Price toys in the play corner and others watched
television. A young woman played on her cell phone. She accompanied
a girl and I thought she had to be the girl‟s sister. Where is the mother?
How does this young girl feel about taking on the responsibility?
Everyone was busy with their own thing. Content to wait or just used to
waiting? The little boy‟s mom yawned.
The doctors have discussions in the passage outside the waiting room
entrance. They come to the desk to write in patient files and take new
ones. The cardiac doctors arrive later and shout out patient‟s names from
outside the waiting area. The mother with the little boy starts chatting to
two other women about what I think is the cardiac clinic. I just caught
some words „le check up‟ „e all right‟ „small operation‟ „serious‟ „six
months‟. The first cardiac patient to be called was part of the group
chatting to the mom with the little boy.
The children made friends passing toys to each other. The little boy lost
interest in the soccer. A new genetics patient is called. The little boy is
called next – a cardiac appointment thank goodness or is it. Frenzy
comes over the waiting room as patient‟s names are called for cardiac
clinic. It becomes quiet again. The television is a good distracter. The
291 Appendices
Counsellor checks again - still no Mary. Other doctors and clinic staff
also come to look for her. Another patient is called from outside – the
mother looked irritated. I wondered how she experienced the service and
the doctors and what they do for her and her child. We wait.
Patients come and go. Names are called. Some leave and others came
back and wait. The little boy‟s mother is sleeping on her arms. He rubs
her back as he watches television again. No one gets upset. They wait -
some for hours. The cosy waiting room becomes less comfortable and the
wooden bench unyielding. Without warning a doctor shouted „okay let‟s
go‟. The little boy waved at me saying „bye-bye Ma‟m‟. All the patients
got up and left……
Suddenly the waiting room was empty with only the television playing.
* * * * *
292 Appendices
Appendix H: Patient participant demographic data
293 Appendices
PATIENT PARTICIPANT DEMOGRAPHIC DATA
Code: ______________
Date of Birth: __________________________
Ethnicity: __________________________
First Language: __________________________
Marital Status: __________________________
Employment status: __________________________
Income: __________________________
Highest level of Education: __________________________
Area where participant lives: __________________________
Number of children: P _________ G __________
__________________________
Pregnancy: Planned [ ] Unplanned [ ]
Ultrasound results: ___________________________________________
___________________________________________
___________________________________________
Gestation at time of counselling ___________________________
Diagnosis: ___________________________
294 Appendices
Appendix I: Demographic information on counsellor participants
295 Appendices
DEMOGRAPHIC INFORMATION ON COUNSELLOR PARTICIPANTS
Code: ______________
Date of Birth: __________________________
Ethnicity: __________________________
First Language: __________________________
Other Languages: __________________________
Years in the field: __________________________
Qualification: __________________________
Background: __________________________
296 Appendices
Appendix J: Transcription Conventions
297 Appendices
Transcription Conventions
VERBAL CONVENTIONS (Schegloff 2007)
Wo[rd Overlap onset
[word
Word] Overlap end
Wo]rd
word Verbal utterance
(2.0) Pause of 2 seconds
- Cut-off or self-interruption
( ) Verbal utterance not heard/understood
(word) Guess of verbal utterance
((laughs)) Description of events
. Falling intonation
? Rising intonation
, Continuing intonation
word Rising syllable intonation
word Falling syllable intonation
word Stress or emphasis oword
o Softly spoken
wordo
Decreasing volume
WORD Loudly spoken
Wo:rd Lengthened sound preceding colon
<word> Pronounced at slower speed than surrounding talk
>Word< Pronounced at higher speed than surrounding talk
Word> Decreasing speed
Word< Increasing speed
hhh Audible aspiration .hh Audible Inhalation
NON-VERBAL (Heath 1986)
_______
word
Gaze directed as face of co-participant
_ _ _ _ _ _
file
word
Gaze directed at object
,,,,,,,
word
Turning away from co-participant
……
word
Turning towards participant
raises hand
1. 2.
------- -------
Word
Movement
298 Appendices
Appendix K: Ethics approval
299 Appendices
300 Appendices
Appendix L: Letter requesting permission to perform research in area 157
Johannesburg hospital.
301 Appendices
National Health Laboratory ServiceUniversity of the Witwatersrand, School Of Pathology
Division Human Genetics
GENETIC COUNSELLING CLINIC
Hospital Street, Johannesburg 2001 PO Box 1038, Johannesburg 2000
Telephone: +27-11-489-9224/9223/9211 Fax: +27-11-489-9226
Prof A Christianson 011 489-9211 Prof A Krause 011 489-9219 Ms T Wessels 011 489-9243
29 May 2007
Dr S Moodley
Head: Fetal Medicine Unit
Johannesburg Hospital
Private Bag X39
2193 Parktown
Dear Dr Moodley
PERMISSION TO PERFORM RESEARCH
I am a genetic counsellor in the Division Human Genetic of the National Health Laboratory
Service and the University of the Witwatersrand. I am registered for a PhD in Genetic counselling
at the University of the Witwatersrand a project entitled ―The characteristics of the Genetic
counselling process in an antenatal, multicultural setting‖. My supervisor is Prof Claire Penn,
Head of Department Speech Pathology and Audiology.
The research proposal has been approved by the Post Graduate Committee of the Faculty of Health
Sciences of the University of the Witwatersrand. Ethics Clearance from the University of the
Witwatersrand‘s Committee for research on human subjects (medical) has granted ethical
clearance to conduct the research – clearance no: M070222.
I am interested to investigate the genetic counselling process in prenatal genetic counselling in our
diverse South African population. I am hoping that a better understanding of this process will help
our department to improve the service we are offering to patients. Patient participation will involve
video recordings of the counselling sessions and audio recordings of interviews with the patients
and counsellors after the Genetic counselling session.
There is very limited research available on the genetic counselling process, and research on this
topic in our South African population has never been conducted. We feel therefore that this
project will provide valuable information that would inform the practice of Genetic counselling
and in turn the service offered at the Johannesburg Hospital.
I would like to conduct this research in Area 157 of the Johannesburg Hospital as we have weekly
Genetic counselling clinics in association with you and Dr J Jeebodh. I have discussed with Prof
Guidozzi who informed me that permission can be obtained from you as head of this unit.
We hope that our request will be favourably considered.
Kind Regards
Ms Tina-Marié Wessels MSc(Med)
Genetic Counsellor
CC: Prof F Guidozzi, Dr W Mofolo
302 Appendices
Appendix M: Letter requesting permission to perform research at RMMCH.
303 Appendices
National Health Laboratory ServiceUniversity of the Witwatersrand, School Of Pathology
Division Human Genetics
GENETIC COUNSELLING CLINIC
Hospital Street, Johannesburg 2001 PO Box 1038, Johannesburg 2000
Telephone: +27-11-489-9224/9223/9211 Fax: +27-11-489-9226
Prof A Christianson 011 489-9211 Prof A Krause 011 489-9219 Ms T Wessels 011 489-9243
9 October 2007
Mrs S Jordaan
Chief Executive Officer
Coronation Women‘s and Children Hospital
Fax No: 011-6735658
Dear Mrs Jordaan
PERMISSION TO PERFORM RESEARCH
I am a genetic counsellor in the Division Human Genetic of the National Health Laboratory
Service and the University of the Witwatersrand. I am registered for a PhD in Genetic counselling
at the University of the Witwatersrand a project entitled ―The characteristics of the Genetic
counselling process in an antenatal, multicultural setting‖. My supervisor is Prof Claire Penn,
Head of Department Speech Pathology and Audiology.
The research proposal has been approved by the Post Graduate Committee of the Faculty of Health
Sciences of the University of the Witwatersrand. Ethics Clearance from the University of the
Witwatersrand‘s Committee for research on human subjects (medical) has granted ethical
clearance to conduct the research – clearance no: M070222.
I am interested to investigate the genetic counselling process in prenatal genetic counselling in our
diverse South African population. I am hoping that a better understanding of this process will help
our department to improve the service we are offering to patients. Patient participation will involve
video recordings of the counselling sessions and audio recordings of interviews with the patients
and counsellors after the Genetic counselling session.
There is very limited research available on the genetic counselling process, and research on this
topic in our South African population has never been conducted. We feel therefore that this
project will provide valuable information that would inform the practice of Genetic counselling
and in turn the service offered at the Hospital.
I would like to conduct this research in the Specialist Clinic of the Coronation Women‘s and
Children Hospital as we have a weekly Genetic counselling clinic. The research will not disrupt
the normal services provided to patients.
I hope that my request will be favourably considered.
Kind Regards
Ms Tina-Marié Wessels MSc(Med)
Genetic Counsellor
304 Appendices
Appendix N Set up in the 17 counselling sessions
305 Appendices
Session P01
Session P02
306 Appendices
Session P03
Session 01
307 Appendices
Session 02
Session 05
308 Appendices
Session 06
Session 07
309 Appendices
Session 08
Session 09
310 Appendices
Session 10
Session 11
311 Appendices
Session 12
Session 13
312 Appendices
Session 14
Session 15
313 Appendices
Session 16
314 References
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